Living with SMA - Sickness has hit us Hard

Grab a box of kleenex and watch this video . Its beautiful!! Please watch!!

http://www.youtube.com/user/robbierosensings#p/a/f/0/mZ51wEIWrNk


I am now sicker than a I have been in awhile. A brutal virus has attacked our upper respiratory and its some nasty stuff.  Lizzy had gotten very sick by Tuesday.  I have been doing extra treatments for her since she started getting sick now its hit me.  She has not been on bipap since yesterday. She is much better now but it has taken much work to get her through this. I mean its that thick nasty junk in your throat, your nose constantly runs,.Its hard for me to get productive can you imaging how its been for Lizzy?  I woke up this morning feeling like I could not breathe. I felt like my breathing passages where shutting down. I gasped for air upon waking up.
My poor Lizzy. She is such a trooper to be going through this.  Oh my its been quite an ordeal all week.She is doing great get through this!!!. She is off bipap and feeling much better. Still getting nasty crude out of her nose.
Now how did we got this illness?. Hum..... ignorance and somebody trying to act like that dote over Lizzy and exposed her to people that had their faces in hers. GRRRRR  I do not try to keep Lizzy to myself when we go places in public I like to be around Lizzy because I hover over her like a mother hen keeping others out of her face and not touching her. Like DUH ..... sick people stay away from us!! You suck!! To put Lizzy through this illness is. Who would go to a child's benefit with a virus?

DR.Schroth called Lizzy is a script on her way home from Florida on the plane. Bless her heart she is such a great lady. How many doctors would do that? Ahhhhh lets see ..... one DR.Mary Schroth!!
So , if I have not responded to you I am so sorry!!
Keep us in your prayers!!

Please view theses two sites its so important to get the word out on how
dangerous the problem of HAIs and specifically VAPs can be , The two site for those are at haiwatch.com and
vap.kchealthcare.com

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

www.our-sma-angels.com/elizabeth 

Living with Spinal Muscular Atrophy -Frustration with Ignorance

I have to say I am very frustrated with the medical profession in this area when it comes to SMA. How many babies are going to die before they actually accept that there is a care guide for SMA.
I spent the morning talking on the phone with the parent of the baby that earned his wings a few weeks ago at the tender age of 9 months old. He lost his life at in area hospital. He was a twin. His sister shows no symptoms but has not been tested yet.
Listening to this mom's story brought the same grief I felt over 7 years ago. How can these specialists in central IL can be so unprofessional  not to research the information about SMA and give the parents NO HOPE? They actually told them its inhumane to trach a child with SMA. What? Its inhumane to let a baby die of suffocation and starvation. He did not die from SMA he died from ignorance of the doctors in my opinion.
I miss DR.Hough so much because he listened and did everything he could to help Elizabeth.

Recently there was a video posted on a well known SMA doctor that  questions prolonging these kids lives. Really? What the heck  This doctor britches got so big that they are playing GOD now? This doctor does not deserve to care for these precious children. The video was quickly removed  with in hours after some parents saw it.  Why does this doctor  adorn herself/himself an SMA doctor? What is going on? What gives these doctors the right to say these things? She/he is a traitor to our cause. She/He is traitor to them self.

We need doctors that will fight for us like DR.Schroth!! She has helped us many times in our fight to save Lizzy. She is true to us and these kids.
These children are precious gifts and need some special care from people who love them. DR.Schroth is that that person to us and many kids.

There is a family care guide for SMA. http://jcn.sagepub.com/cgi/content/abstract/22/8/1027  Its been published since 2007 This is the universal care guide for SMA. There is no excuses for doctors any where not to know about this.

We need to get more awareness out there!! We need to make these doctors listen to us!! What can we do?
I need ideas here to get these doctors to read the information and practice this care plan!!

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

Living with SMA - The Kindness of People in the Community and Another Divine Intervention

The Fighting for Lizzy Benefit was last night. It was not a huge turn out but considering the weather and how this area has been hit hard with the times it went well.
We raised enough money to help pay for Elizabeth's therapies, some trips to doctor visits to Madison and some things Lizzy needs we are unable to get her . That is just so awesome!!. My bows I made brought in some good money. I was shocked to see a bidding war between three ladies over them. Amazing how something I do as a hobby but as one grandmother told me ( made with love)  went over so well and raised money for Elizabeth. The bows I make were inspired by Elizabeth. I was going to buy her some one day and I saw how much they cost and decided I would teach myself how to make them and I have now for a few years. The bows I sell as logo " Inspired by Lizzy".

I was disappointed that my old friends from here and some family did not show up but all in all it went pretty well. Our goal was getting enough money for good down payment for a E150 van for Lizzy. That did not happen but your goals are always bigger than reality and we are just as happy for what we got.  So, many people we did not even know came to the benefit because they heard about Lizzy and wanted to help. It was so great. Lizzy has touched many lives in this community. Thank you all that attended, helped , donated and bought!! You make me proud to be from Pontiac,IL. All four generations for the auctioneers were there from 1 family. The auction went great. My friend Deb Zebell helped so much with getting the donations and so did Billie, Dawn, Melanie, Vickie and Beth. Christen did a lot of running herself.  Barb did Face painting also.
Its been a crazy last few weeks.

 Lizzy is over her sinus infection and doing well. She had a blast last night. She is super whiny today. Kinda of hard on the ears and the nerves. We were going to Easter Seals today for a Halloween party but.... Lizzy was way to whiny to go. Hoping she is NOT getting sick.

My drama for last week was Christen losing my debit card. You know that feeling where you get this over whelming urge to puke your guts out? The pain in your stomach is so intense you can hardly breathe? We were shopping after swim therapy last week and had to get some last minute things for the benefit. I used my debt once. Well, Christen keeps it in her wallet with my drivers licence because okay lets face it I do not leave the house much and with all the things we have to carry around with us me carrying a purse I might loose it. It had fell out at one of the stores we went to when she paid cash for Lizzy's Halloween costume. She had not put it back in the regular spot and had it in her cash. After lots of prayers she found it in the last place we had went. She had ran in alone. The cashier had picked it up off the floor and gave it to the service desk.
Oh my gosh!!  I can not believe an honest person found it. Amazing. Divine intervention at work again!! My chanting prayers were answered.   breathing a "Sigh of relief" Christen got a 15 minute lecture after I got it back. Then we went grocery shopping.

Reed Michael is home. He is some pain but did not need surgery because he is healing well. He had streph in his knee and is healing well. It was great to see him !! So glad he is home. He can not do much for eight weeks.
Paul has been actively looking for work.... No luck yet!!

Now, to get my house clean and life back to normal as ever as normal is.

Thank you for all that helped and donated at Lizzy's benefit!!
Keep us in your prayers!!
"We believe in miracles because we live with one!"

Fighting for Lizzy bracelets on Now on Sale  for $2.00 and .50 a piece shipping and handling.
Send money orders or checks to:
All proceeds go to the Fighting for Lizzy Fund
Make sure to include how many and your address

Fighting for Lizzy Fund
219 East Water St.
Pontiac, IL 61764

The Dove means HOPE.


www.our-sma-angels.com/elizabeth

Sigh of disbelief and Believing in Miracles - Living with Spinal Muscular Atrophy type 1

Don't you love Lizzy's new kimono? Her Aunt Rita and Uncle Jim send her one every year for her birthday!! Hard to believe Elizabeth is seven years old!! She  did not want her picture taken so I had a hard time getting her picture above.

Its been a while since I have updated. Lizzy has been great for months. She is very much quite aware of EVERY-THING that goes on around her. She is very opinionated about EVERY thing also. If you need to know anything just ask her. I love her so very much. She is just a great kid.
 Lizzy is  now showing the first signs of a sinus infection so I have upped treatments today. Keep her in your prayers. She is okay right now but secretions galore and stuffy nose. No swim therapy today :(  first time in a long time. We just could not chance taking her out with the symptoms she is having. She was mad about missing swimming as she loves it!!
These days I have been so busy . My husband's lap top was broken (from unknown means) I do not have time to pop on the home pc to update. I can not get too far from Lizzy because she needs suctioning, moved around, help with home work or just wants me close. Which is all the time. I am not complaining its just the way things are around here. Its my life.

Reed Michael graduated today from the guard but.... with all that pride we felt was quickly replaced with  worry and concern due an accident or something that recently happened to Reed . Just look at his leg below.after the cake I bought for him that will be taken to him on Sunday. This all happened right after graduation.

 You are beaming ear to ear with pride , then a sigh of disbelief and the reality of  Reed Michael having surgery today because of an injury or  a spider bite. His leg swelled double in size and having to be drained. Have you ever just been so upset that your knees go weak and your heart just aches and you are afraid to breath? OH  MY gosh....... then you think OMG.... this is NOT A DREAM this is Reality!! This just sucks!! Poor Reed!!

The school here is not getting Lizzy a tutor. Its now almost NOVEMBER. She is learning on the computer yes. but she needs a teacher. She just  does not cooperate for me or focus on the one to one with her and I.  The Video conferencing is out according to the school. Come on people. Elizabeth is 7 years old. I have been trying to do this alone but as GREAT as I am I am not educated to be a teacher. I am educated in Sociology. Political Science and Criminal Justice. I am a great nurse to Lizzy but that is an inherited and in my genes. My great grandmother was a midwife in Canada. Teaching qualities have never been my expertise.
We have been doing ABC eggs and she is doing well but she needs more.

On a good note. I had two great things happen to me this week. My blog is on the top 30 on the SMA web-sites for 2010. That was quite an honor.People actually read my blog!! Thank you.
I also got a letter from another parent praising me for just being me. That was really nice and quite unexpected.
Lizzy's fundraiser is next week-end. Lots going on!!

I have been making hair bows and will be selling them at the fundraiser and making some for another organization.  I am also making gifts baskets of many different items to do a white elephant sale also. I have not had much time all summer to work on making bows but now in the evenings I am making some. I need to power sew to make a lot!! If I was not so darn picky I could mass produce!!

Paul has not gotten a job since he has finished school. He has applied for jobs  but NOTHING as of yet! I know patience.... He  was not born with patience!!  He is afraid its his age. The man is 56 years old.

Robby was here for his birthday Oct.3. He went golfing with Paul.  I made him a home made cake. His school colors. Hard to believe he is 13!! Oh my where has the time gone. I remember his first Harley Coat we bought him. It was size 2. Brings tears to my eyes. Life seems to fly right on by.

A baby earned his wings a few weeks ago that was diagnosed with SMA after he was hospitalized  at age 9 months in an area hospital. We live so close but feel as if we were so far away because no one called or did we know about this little one. This  hurt  us so bad that the hospital is still not doing the protocol for SMA. Send prayers to this family. I have talked to the patient care director and got no where but did sent her the respiratory protocol from DR.Schroth. What can I do to get these people to listen to me? Who can I talk to to help me with this?
An article about Elizabeth is being done soon by a local paper because of her benefit. I will again express the importance on the area doctors at least looking at the protocol. It could save a baby's life. These kids are miracles and their lives so precious.

Please add Reed Michael, Elizabeth and all the families that need prayers to your list.

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