Update and Please Vote - Living with Spinal Muscular Atrophy Type 1

Finally an update.

 Ever just want to drop quick your computer? Grrrrrrrr My home pc has been totally malfunctioning since before Christmas and just kept getting worse. I would think I had it fixed then it would no work. I have tried to post updates this past week and then my pc would NOT RESPOND . Jessica my daughter  got a newer PC and she gave me my old one back. It took all night last night to clean it up and update it but I am BACK!!  Very annoying to say the least to not be able to get on your PC and not be able to to a hardly anything.

Lizzy had a small fundraiser last week-end in Streator. It was mainly her Dad's  family   ( many have never met Elizabeth) . It was nice. It was basically a fundraising family reunion with benefits. LOL. We had thought it was the motorcycle club the Screaming Eagles and Ladies of the Moose having the benefit for Lizzy. Well Saturday we found out it was the Eagle Club ( Men's club much like the Legion) that donated their hall for the event and paid the DJ . It was VERY nice. for them to do that for her.  Lizzy had a great time. She looked beautiful . She had on a deep pink dress and looked like a princess. She wore ballet shoes and did not want not the night to end.

  They raised just under $2000.00. This will help so much with some needs for Elizabeth's . It will help with her MFR therapy  and some of her medical travel. Which helps so much. It was Elizabeth's Dad's Grandma that did this wonderful thing for Elizabeth. It was a very interesting evening. Brandon had not seen his Dad in 13 years or any of his aunts or uncles for years. It was like a TV reality "The Locator" . It was so amazing they all got together to for Elizabeth. They came from all over. It was a very emotional night for Brandon.


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

Here is what I am asking of you all.

The Chase Community Giving campaign voting on Facebook is extremely close and GSF is right in the thick of it. We are neck and neck for a spot in the top six and we currently have nearly 20,000 votes -- and a real chance to win at least $100,000 for being voted in the top six or $1,000,000 for being voted #1.


WE NEED YOUR HELP -- every single vote is absolutely critical!

We need you to do the following TODAY:VOTE on Facebook -- http://VoteForSMA.com -- if you can't get through, please keep trying as Chase is having load issuesPOST the link to your Facebook wall -- http://VoteForSMA.com -- if you already did this, please do it again and again and again all weekPOST the video to your Facebook wall -- http://www.youtube.com/watch?v=RQkUwDEou7QEMAIL the voting link + the video to at least 20 people -- http://VoteForSMA.com + http://www.youtube.com/watch?v=RQkUwDEou7QTWEET the voting + video link -- http://VoteForSMA.com + http://www.youtube.com/watch?v=RQkUwDEou7QThis is an incredible grassroots movement that we are all part of and what we are accomplishing is truly incredible. There is enormous passion behind GSF: fighting for SMA funding and raising a ton of SMA awareness in the process. Thousands of people have come together to fight this cruel disease and give these vibrant children dying of SMA the future they so deserve. For us, it is truly humbling to see what each and every one of you is doing to make this miracle an SMA reality.

Dig deep and please keep rallying for us -- voting ends this Friday, Jan. 22, so time is short. Be part of a MIRACLE today

 Check out MJ's  Video: Its awesome!!
http://www.youtube.com/watch?v=dStn7BBKmWQ

"We believe in Miracles because we live with one"

Living with Spinal Muscular Atrophy - Why?

Do you ever ask yourself why things happen the way they do? Why did God pick you to have the life you have? Is you destiny chosen for you or do you  make it? Are we able to change our destiny? No one can answer these questions. I am so tired lately. Worn out and can not sleep at night  My back hurts so badly these day and worrying about things keeps me awake till late. Then, something happen unexpectly to help but....  I still can not sleep. What is up with that? My Gosh. Sleep its required to survive isnt it? I dont think I have slept over 5 hours a night in years. Sleep what is that. A nap ? I have not napped since I was an infant.

The last few months so many babies/kids with SMA have earned their wings. Type 1s and 2s. You just want to know why? Why so many kids? Did they not know how to help these kids or was it just their time. Why so many?  Twelve I was told by another Mom. TWELVE.....**Sigh** Twelve children with this awful disease. Twelve families dealing with the loss of their loved ones. Why are so many of these doctors still so ignorant on caring for these kids correctly? I know from our experiences how arrogant and ignorant some of the professionals are that are in the PICUs in our state. Why do they not want to learn? Is there a way to make it a law that doctors take a course in Spinal Muscular Atrophy?  Some body please tell me how to do this.

In our area we have two good hospitals but we can NOT take Lizzy there because they still "do not get it". We have had her intubated here once and flown to another hospital in the area. Then, because the doctor would not do what was neccesary to help Elizabeth we had to life-flight her to Madison with DR.Schroth. Madison come and got her.  The doctor here said Elizabeth was just progressing . She was NOT !! She was sick and just needed a little help.

Here is our first experience with a hospital in Chicago when we came close to losing Elizbeth because of ignorance accompanied with arrogance. From Lizzy's archives on her SMA web-site.
"When we landed they had an ambulance there waiting. They still refused to let us do a treatment. When we got to Christ Hospital ER we told them what Elizabeth had what her treatments were and please..... call Dr.Schroth. The ER Doctor refused saying she was not on staff. Well, after us sticking to our guns threatening lawsuit several times and Christen almost attacking the ER doctor they finally listened to us and called up to Madison. The respiratory therapist let me do Elizabeth's Cough asst,chest pt , suction and put Elizabeth on bipap. Elizabeth was stable and they said they wanted her to keep her in for observation. Her heart rate was 145-150 and her ox level was 98-100. We were in ER 7 hours. So, she was taken upstairs and she had good color. I gave her a cough and another respiratory therapist was watching and then I was started to do chest pt then suctioning her out and the respiratory therapist changed Elizabeth Bipap mask to one that covered her whole mouth ( I was freaking asking why?)and Elizabeth started coughing on secretions and the respiratory therapist stuck a nose suction catherator down her throat and the sections were so bad she choked and went into Respiratory Arrest. I kept calling her saying "Elizabeth its not your time please come back to your Nina and you have lots to do yet" She had her lung collapse during that time. The doctors and nurses tried to get me out of her room and I said if you think you can move me go head and try!!" I do not know how many times I called her then she looked right at me through the bars at the end of her crib and her ox levels starting going up. She never did totally lose her heart rate totally. I was praying so hard then the color started coming back to her little face but her lips were so white. I think I was about to have heart failure."

If they would of let ME give her a full treatment on the plane this NEVER would of happened or when we landed. That is just one of the two times Elizabeth was taking to the hospital because for respiratory issues . Both times she ended up in Madison,WI after terrible ordeals with the hospitals here.
We have our own power supply now Pure sine wave inverter and marine battery and we had approval on every flight since then to use it if we had to.
Elizabeth wears bipap when flying because of the recycled dry air on a plane. Just a few things we learned. We learned to fly with bipap from DR.Schroth and the battery back up from other parents. You would think with the Family Care Guides DR. Wang and DR.Schroth help write that things would change for the better.
I hate SMA but I have learned to live with it.

Enough said.

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

Living with SMA - Update,Computer issues& cold weather

My home computer has not been running well...... I cleaned it totally out and still issues.  I  have  been  having issues for WEEKS!!  I could not hardly do anything on it. I feel so out of touch!!!!!   No , virus it was some issues with the reg. files among other issues.  I feel so confined when my PC is not working right. I don't know what happened but I think I fixed it finally. Its getting old I guess. I was actually feeling totally isolated with not being able to use it much. I would get online for about 10 min's check my emails and try to post on my  face book and other web-sites then it would FREEZE... So annoying... I would run my McAfee maintenance programs and clean it out EVERY day and still nothing worked. Grrrrrrr So, that is my excuse for not updating, Sad, but true. I spent a few hours on it today and I think I finally got is running right. whoooooo hoooooo . Elizabeth was working  on her computer being entertained by "Arthur" right next to me.


Its finally going to be bearable weather tomorrow I guess. This cold weather makes my bones ache!! My skin is so dry right now you would think I had alligator skin. eeeewwwww. I do not think I have ever  been so cold for this long. brrrrrrrrr

Lizzy is doing great. I do not want jinx myself on that one . Every time, I say that we have issues with in a few days.( Pouring a little salt over my shoulder for luck)  I have to let people know she is doing great since we are still living in our SNOW GLOBE( Bubble) and no one has seen is . She is such a great kid. She is my heart. No longer can we SPELL things out in front of her . She KNOWS what we are spelling now. It may take her a few minutes but she figures  out what we spelled.

Elizabeth is has been learning and boy has her vocabulary expanded. Oh Boy..... you will not believe some of the things she says. She loves all her wonderful Christmas gifts. Oh and she had gotten a shirt for Christmas that said "Let it snow" and she wore it the day it snowed here 6 inches last week!!  Too funny she says it because she wanted more snow and she wore her shirt that says "Let it Snow"

Its so great to have friends that actually care so much about you. That truly care. I feel so lucky to have good honest caring friends in my life. Thank you!! We love you and miss you terribly!!

We have been trying to warm ourselves up around here thinking about the summer and plans. Its not working . My finger tips are freezing as I peck on my pc. We have a few trips planned. We were going to let Lizzy go to MDA Camp with us but.... the MDA will not let both Christen and I stay the week with her. Okay.... I realize that is a lot to ask for both of us to stay but my fear of the area Trama hospital and taking care of Elizabeth in a crisis situtation is still very much still implanted in the my brain. It was a nightmare in March of 2005.  Until, they finally "get" how to care for a child with Type 1 SMA like they do in Madison,WI we value Elizabeth's life too much to chance even putting her in a situation like that. I do not think that will ever happen. It will be very hot in July for Elizabeth here and always has been. The camp here is in July this year. I am afraid she will over do ( even though she says she is fine) as she has the past few years and have issues. Nope.....No discussions  about it.... isn't going to happen.  We just are not going take her. So, sorry this is not an option or up for negotiations. Am I wrong? We have worked to hard to get where we are today for one incident set us back. Not that anything would happen but why chance it.

We plan on a trip to Kentucky, two to CA and one to Minnesota this spring /summer. Christen and I are going with Lizzy alone to most every where. Paul will be in school.

Christen finally had a call from Easter Seals and ( Drum rolling ) they are going to evaluate Elizabeth for Swim therapy and OT in Feb. MY gosh. that is just so cool. We will still remain doing the MF release though. It works so well on Lizzy its worth paying out of pocket for it.

We did get some bad news our breast milk donor is going to be quitting. Its sad but she did Elizabeth a great honor by giving us her miracle gift of her breast milk. Its a food from God and helps keep Lizzy strong and growing. Thank you so much for helping Lizzy as long as you did.

Oh and I have been still on my diet!!  I am hoping to continue eating this way forever.

Many Prayers  for all the sick kiddos out there. MJ, Aubrey(Green), Dani , Shira , and many others !!

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

Fighting for Elizabeth Fundraiser - Living with Spinal Muscular Atrophy

                 Fighting For Elizabeth
                       Fundraiser
                  Sat. Jan. 16, 2010
                              6pm-?
                                   Tickets Rene (815) 672-4897
                               Eagle's Club 107 W. Main St.
                                        Streator, IL 61364

            

Fun, Food, and Music by Jay&Co
                        Cash Bar
                  Donations $5.00
          Proceeds go to help the family with Medical Travel costs for    
         doctor appts and medical costs insurance does not cover
                           
                                   
 "We believe in miracles because we live with one"                         
www.our-sma-angels.com/elizabeth

Living in a Snow globe - Living with Spinal Muscular Atrophy

It is still freezing here. It's soooooo cold...Pepper our  dog is peeing ice pellets when she goes out side to pee.

The wind chill is so cold it goes right through you . This leaves a chill that doesn't go away.
I have been searching for the perfect exercises to help my back and also help me lose some inches in my abs. I have done so many and some I have not been able to do because I am too old,out of shape(Imagine that)  or bothers my back. I did find a yoga video  That was great but not very long (3 mins long) on YOU  tube that help stretch me and I could feel it in my stomach and it helped my back.
I quit Curves last March because #1) I caught a bad virus from a mom and brought it home to Lizzy and #2) I could not afford it anymore with Paul's layoff.  I have been pretty good on dieting since Jan 1.  I just  pulled out my book I used to use to lose weight "Lets Do Lunch" by Roger Troy Wilson and will be reading it again and reprogram my mind to DIET.  Dieting is not as easy as it was for me as it was when I quit smoking. I love good food and I love to cook.  Anyone that reads this if have a good Yoga DVD  out there send me the info. red542000@aol.com I need to figure out a way to really stick to this. My focus has been Elizabeth for so long I forgot about taking care of myself. I am so out of the shape. I have to do this. I can not take care of Lizzy properly if I can not move. My back went out on News Years Eve because Rachael accidently bumped my back with her elbow right in that trigger spot. Imagine Ice on a cavity in your tooth but.... times that 10 times worse. It took my breath away and hurt so bad I thought I was going to faint.... That is when I decided it was time to work on me also. I worked on Elizabeth this morning for about an hour and half after I got her treatments done.  She got as usual with her ball time( I stretch her on the exercise ball on her tummy and on her back) , massage with almond oil. stretching etc so I figure once I get her done and get her food started she can watch me for an hour every day. We did today and it worked. Not quite an hour work out for me but once I find a dvd that works for me it will work I think. She loved watching me giving me tips!! LOL 

Elizabeth and I are going to try to change our schedule to get to bed earlier so we can get up earlier. I am up till 3am most of the time.  I watch Lizzy sleep to make sure she is okay. She is in bed asleep by midnight but that is also too late also. I just like staying up late because its peaceful and quiet.
I figure I can get more active in the SMA World again helping families by talking to them and being a VOICE that people listens to if I have more energy and feel better about myself. I do talk to many familes but I think its time I get more involved. I need to share more of what I do with Elizabeth. She is doing more stuff again and I need to help others keep their kids as healthy as Lizzy. Once you get the routine set its gets easier.  I feel I have lived in this giant snow globe for weeks now.  It's wonderful and peaceful in our snow globe but its not healthy for us to keep living this way.
 All the holidays are over and  tree is down.  Decorations are put away . I have some small packages to mail yet....Oh boy being home with out being able to get out to get things done what I need done is driving me crazy. Christen has seriously not been home with out running, babysitting  or cleaning for somebody for WEEKS. Then, she comes home and the post office is closed and falls asleep in the chair. So, she has been no help at all to me till yesterday. She got some cleaning and dusting done.  Hallelujah, I am doing the happy dance. I hate dusting because I am allergic to dust. I think there were "Killer Dust Bunnies" lurking in the corners.  I do the dishes most of the time , the cooking, wash clothes and other households chores besides take care of Lizzy.   So, its a trade off for Christen to dust and help me clean.
Well, time for me to get Lizzy started back on her home schooling.
Stay warm.
"We believe in miracles because we live with one."
www.our-sma-angels.com/elizabeth

Another year to make History ( Living with Spinal Muscular Atrophy)

Brrrrrrrr its flipping Freezing out-side!!!
Happy  New year ! Wow..... 2010.... Takes a second and a deep breath to believe we are here. When, I was a kid  in the 70s the year 2000 was like the  space age. You know we would all be in our own space ships traveling around . LOL  We all dont have space ships but There has been lots of changes since I was a kid in this world of ours. So.  many wonderful things have happened and some terrible .   I do miss the 70s and 80s.  Remember that movie series "Back to the Future" . I loved it. I wish we could go back sometimes and hit play and do it over. Life seemed easier then.  I have all the movies in Video in that series Back to the Future. Yeah...... Not that I can use them now. My Video  cassette  died about a year ago. I can not part with the videos..... I keep thinking I will find another one some where. I am a "pack rat" I guess. The first VHS player we bought was around $300.00 . You could of bought a  DVD player for $25.00 they day after Thanksgiving. Now, they have Blue Ray...  DVD players will be something of the past here soon. 
Will they find a treatment that will make Elizabeth's quality of life better in 2010? Will they find a cure? If they find a cure will it help the kids that are older? Hmmmm so many questions we hold trapped in our brains. I just do what I do every day to give Lizzy the best quality life I can. These days her and I have been very busy entertaining each other. Her little mind is so sharp and NOTHING gets by here.

Elizabeth had the best Christmas ever. She got everything she wanted and more.  I got some nice things. I personalized pan with my name engraved on it. (I love it), a cook book , a beautiful shelf (for my recycled bathroom. Ooops meant redone,_  a beautiful bracelet, a willow tree Angel( I have collected angels for many years), a few surprises (  a  little Cash  totally unexpected) and lots of  great family time. I did not take a lot of pictures because Elizabeth's Dad was here when Elizabeth opened some her gifts Christmas day (at the crack of Dawn mind you. ) and took a lot of her presents upstairs to my and Lizzy's bed. So..... hmmmm I was not able to get my camera fast enough but did get a few hear and there. My husband and I both watched Elizabeth's face and it was something the two of us will never forget. I do not think any Christmas can compare to this one. Thank you!!

I started a diet yesterday I have 80 pounds to lose. Yes, 80. So, far I have done well but this diet stuff I have been eating has been making me( Okay I am talking like my Mom now) pass gas all day long for the past two days!! As, Lizzy would say ewwwwwww.  I did not want to share this TMI but its embassassing to say the least. LOL Good thing I do not plan on going
anywhere for awhile. I HAVE to do this for myself. I quit smoking  3+ years ago I can do this. I  quit smoking for Lizzy. No regrets nothing. Just quit. I did not smoke ever around Lizzy and always went outside to do it. It was my 10 minutes of breaking away a few times a day. Then, I could not get outside for a break anymore and  I decided that was it I was done. 
I have started diets before but not where I have decided in my mind I was going to succeed no matter what. I am going to do this no matter what. No excuses... I will do this. I need your help here to keep me on the right path to getting my health back.  Its true..... I have had to lose weight before this past 5 years and always lost it. I have never been as heavy as I am now. Steriods do that to you. I have had two bad back injuries and steroids make me BLOW up and all kinds of side effects. I have been off them awhile now.

Elizabeth has been  doing more amazing things. She was at MF release therapy this past week she was on her belly and had her head in the hole of the table and pulled her head up herself. YEEEEEEEES!!!!  That is my Lizzy. Never stops amazing me. She has been sitting up straighter again and a few other great things. 

We had a little contact in the beginning with a Mom From Rockford,IL when her daughter was first diagnosed with SMA Type 1.
I got the news this week she earned her wings. So sad.  I hate SMA !!

Mikalah Marie McCammond, 4, of Rockford, died Sunday, Dec. 27, 2009 at Rockford Memorial Hospital from complications of SMA type 1. Born Aug. 13, 2005, daughter of Terry McCammond and Heidi Bauer. Her favorite colors were orange, pink and purple. She enjoyed reading books, crafts, beads, movies and music. Everyone that met her loved her. She is survived by her Mother and Father, brother Khaled Harrell, MawMaw Lisa Bauer, Step-dad Michael Harrell, Grandpa Art McCammond, great-grandma Carol Rall, bestess friend Beth Johnson and many Aunts, Uncles and cousins and nurses Connie, Kris, Alonda, Johnette. Thanks to Doctors and nurses from Rockford Memorial Hospital and Rush University Medical Center for taking care of her.She is predeceased by her grandma Edith McCammond in 2008. Funeral service Wednesday, January 6 , 2010 at 11:00 a.m. at Fitzgerald Funeral Home, Mulford Chapel, 1860 S. Mulford Rd. Interment in New Milford Cemetery. Visitation Wednesday from 10:00 to 11:00 in the funeral home. A luncheon will be held in the New Mill Tap, and everyone is invited to please bring a dish to pass. Extend online condolences at: http://www.fitzgeraldfh.com/
 Many Prayers to her Family. Fly high Little one fly free of disease.


Many prayers to all our friends. MJ and  Stella  get better soon!! 

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

Merry Christmas- Living with Spinal Muscular Atrophy Type 1

Merry Christmas !! Thank you to our wonderful friends that have helped us get through this holiday during our hard times. You are wonderful special people and you made this the best ever Christmas for Elizabeth.  There was a point Elizabeth was trembling she was so excited on her gifts. The kindness you have showed , the gifts of love you sent Elizabeth, the memories are embedded in our hearts. My husband was so touch this morning at all wonderful gifts Elizabeth had received he had tears flowing down his face as I did also.

You never know how much people care about you until they are there for you in your time of need.
Thank you for the gifts you gave Christen and me also. So, touching and heart warming
Thank you thank you Thank you!!!! 
This is one Christmas we will never forget!!
God Bless !
"We believe in miracles because we live with one"
www.our-sma-angels.com/elizabeth