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

Lizzy's Story featured in Hope and Light foundation Newsletter-Spinal Muscular Atrophy

Happy Holidays from the Hope & Light Foundation
Thanks to so many generous donors and supporters we were able to offer more hope than ever to children with SMA and their families! A research grant enabled Dr. Ching Wang at Stanford University Medical Center to continue his work and drug trial for SMA Type I. In this issue you can read about a child who is benefitting from the drug trial. Please take a moment to read Lizzy's Story and learn how gifts like yours help make miracles happen! You can also read about the Hope and Light Foundation's Medical Conference which updated doctors, therapists and parents on the latest care and treatment options for SMA.



As we wrap up 2009, I would like to take this opportunity to thank you for your support, prayers, and gifts of healing and hope!



Best wishes,



Stephanie Miller

Co-founder and President







Conference Sheds Light on Advances for SMA

The Hope and Light Foundation took on the ambitious project of organizing a regional conference to disseminate information about the care of children affected by SMA. The Conference on Standard of Care and Therapeutic Advances for SMA took place on May 2, and was held in partnership with the Emory University School of Medicine, Department of Neurology. Read More.







Believe in Miracles: Lizzy's SMA Story



It was love at first sight when Jeanna Huette laid eyes on her granddaughter Elizabeth, born on Sept. 29, 2003. The baby, who would be known as Lizzy, was the first child born to her daughter Christen.



I remember when Lizzy was being tended to shortly after birth, she heard my voice and lifted her head to look over at me and our eyes met for the very first time. It was love at first sight; it was also the only time I was able to witness Lizzy holding her head up unassisted, she said.



To read more about Lizzy's amazing 6-year battle against SMA, please click here http://www.hopeandlight.org/lizzy1.html



Online Charity Auction for Hope & Light on eBay

The Hope and Light Foundation Online Charity Auction was a huge success! Thanks to everyone who supported the fundraiser. It's never too early to start helping with next year's auction. If you would like to volunteer for the 2010 event, please contact Stephanie Miller at 678-591-8331 or smiller@hopeandlight.org



Our Mission: Through faith, hope, and love, the Hope and Light Foundation endeavors to eliminate Spinal Muscular Atrophy, empower our community, and create a foundation stone upon which cures for all childhood genetic diseases can be built.









Connect With Us
Give a Gift of Hope      http://www.hopeandlight.org

As the year comes to a close, each and every gift helps. Gifts of all sizes make a difference! To make a year-end gift or become a monthly donor, visit our donation page.










Visit Hope & Light http://www.hopeandlight.org

Anticipation for the Man in the Red Suit - Spinal Muscular Atrophy Type 1

Sorry for the lack of updates. I have been busy with Elizabeth keeping her little mind stimulated. My PC was running very SLOW so I deleted lots spy ware!! Its running better now but still having a few issues. No viruses thank goodness.

Hope you are having a great holiday season .

Caitlyn was here today and made this snow man for Lizzy. It was too cold today for Lizzy to go out but she will get to go out here soon to use her sled. We will make sure of it. Watch for pics !!

Its will be a great one holiday for Elizabeth. The anticipation for that man in the red suit making her Christmas special is consuming Elizabeth's thoughts daily. I think 10 + times a day I hear " Nina is Christmas tomorrow? " There were a few elves that have made this Christmas quite special for her. She is so excited!!

Paul got his Christmas miracle a BIT early. He got the news on Monday for sure. He will be getting to go to Trade School Jan. 4. Application approved, All grants have been approved, student loan set up and he is so excited. I am glad he is able to do this. He is going into HVAC and Green technologies. Nine months he will be going to school 5 days a week. Its will be another hard year but..... the outcome will be great. He can even start his own business with in a year possibly they told him. I am just so excited for him!!  For us!!

My brother is home from Kuwait for the holidays, his wife and my niece Ariel. I will be baking his Christmas present. I am making Swedish T-rings tomorrow hopefully. I bake these T rings every year but I never make enough it seems. Paul and Christen have not been much help with Lizzy the last month or so. I have feeling quite over whelmed lately and the fact not having the money for Christmas shopping really upset me. But..... I am not going to let it consume me and ruin the holidays. I am just got to bake and cook for my family. Its a special time of year. I am a great cook  and I know it.


Lizzy has grown again and is doing good. Thank God for her health and strength.

God Bless you all and have a Great Holiday . Thank you my dear friends for for being in my life.

Many prayers For MJ. She is still very sick.


"We believe in Miracles because we live with one."

www.our-sma-angels.com/elizabeth

A Magical Night at Oz The Musical - Spinal Muscular Atrophy

This was a great night for Elizabeth .

Elizabeth above with Disney star Orlando Brown. He played the Lion. He was excited to meet her. I was impressed with how kind and how he showed so much love towards Elizabeth

We took Elizabeth to the Muscial Oz in Normal,IL on Friday evening. Caitlyn was in the muscial as a munchkin. You could not take pictures during the production so afterwards we got to take pics with all the upcoming stars. Some of the stars were from Disney and American Idol. It was quite an experience for Elizabeth. She was hit with a wave of magical awareness that at times had her breathless at what was going on before her eyes.

Lizzy is pictured here with (left to right) Brenda Castillo,Tierinii Jackson and Tatum Sheers. The Doo-Wop girls.  These girls were great. They thought Elizabeth was beautiful.  They also commented on Dawn and Caitlyn on how beautiful they were too.

Here is Elizabeth and (Left to right) Vince Olmo, Haydee Venessa, Michael Sylvester, and Emily Greenwell. They were the dancers. They also were great to Lizzy . They said they thought Caitlyn needed to be in TV commercial because she had a perfect face for it.

Elizabeth and  "Wicked Witch Brenda"  played by Yes, a guy!! Ryan Knowles. He did very good. Wow.... he gave an excellent performance. Very talented young man. They all were but this guy blew us away. Elizabeth says she did not like him but she would smile and could not take her eyes off of him when we were waiting to get pics. I am sure because he played a scary witch is the reason she did not like him.

Elizabeth and the Wizard of OZ Ryne Sanborn. He was quiet and one of the other actors told us we was in Highschool Muscial. He was sweet.

The scare crow played by Thayne Jasperson and Lizzy. He was so awesome to Lizzy and commented on her Christmas hair bow. He also told Lizzy how beautiful she was. He had a bubbling personality.

Elizabeth and Tin Man played by Nathaniel Flatt. He loved Corbyn.

Elizabeth and "Glinda the Good witch" played by Vonzell Solomon( American Idol 4th season 3rd place ). She was really good actress. She talked to Lizzy also a bit.

Elizabeth and Dorothy played my Aundrea Fimbres . She is a very good actress also. 

The director, writer,choreographer for OZ Todrick Hall. Oh my gosh he was so great to Elizabeth. He asked her how she like the play and all sorts of questions.  He was very good with her. He very much impressed me on how he treated her.

This was quite an experience for Elizabeth. We all thought it was great.

Elizabeth woke up me up with her pulse ox screeching from heart rate reaching 160-190 about 4am. I jumped up thinking it was a fever or she was sick. I woke her up and asked her what was going on. She was dreaming!! Oh my that was scary. Never has that happened before. She was fine after I woke her up.

My kids went together and bought us tickets for this event for our anniversary . I am so happy we we able to go.

Many prayers for all the sick kids and those recovering from surgeries.

Many prayers also for our good friend MJ who just went through a huge surgery.

"We believe in miracles because we live with one"

www.our-sma-angels.com/elizabeth

A day away - Living with Spinal Muscular Atrophy Type 1

Today was a better day . Christen, Elizabeth and I took off for the day. Van packed we headed for the mall and a craft store to begin with. We left around 1pm.
If anyone wants to know where the best deals for Christmas dresses with the best quality is SEARS. I am telling  you I have looked online and no place can beat their prices. I wanted to go look at some of the dresses I have been looking at online.  I have looked all over  online I think the best deals are at Sears. They are 55% off. We were just looking today. Walking around the store I was stunned at the great deals on all their clothes. Great Quality too. So, that is a FYI.
We also went to Michaels also. They had Christmas wooden ornaments 50% off . They are .50-.99 a package. We did get Lizzy some to paint since they were cheap, keeps her busy and not bored. We have to do projects all the time. I know we are on a budget but I did not spend that much and it made her very happy. 
Then, we went to my daughter Dana's house picked up Robby and took him with us. We had to go get Rachael from a choir event in their town. There was Santa and MRS. Clause at the hall where we had to get Rachael. Christen was eyeing the crowd and there was hardly anyone in line. Christen decided Elizabeth would see Santa now. She ran back out to the van and said "Lets get her in there quick " Alrighty, then Elizabeth got to see Santa and Mrs. Clause and it was FREE.  FREE can Not beat that price and they did a picture and sending it to us. Paul paid like $25.00 for pictures for Lizzy at the mall last year and the year before. I wish I would of had my camera but I didn't.  Elizabeth asked Santa for" An American girl doll and socks then she went blank." I guess she did not have time to rehearse her list.   Socks? I know she told us cool socks but she has lots of socks not sure why she insists on socks this year. Her list at home is pretty long. Ranging from dolls to chocolate candy. She got upset on the way home saying "I forgot to tell him this and that....." I said" he knows what  you want Lizzy so no worries sweetie".
So, getting away helped a lot today. It was a good day after we left.

I laid awake all last night just crying over and over thinking about my life. I am not feeling sorry for myself when I am crying for the memories I miss. I miss a lot of our past.  I miss all our girls at home. I miss what Paul and I have lost in our relationship. Just think 35 years of good times as well as the bad.
A good friend reminded me I am the strength that keeps things together in our family. I guess I do.

Christen caught Paul yesterday with swollen eyes several times I guess and when she told the thought just tore me up to know he was at that point. To know he hurts just like I do and shares our worry was  hard for me to realize. He just doesn't not say a lot. That is why he has been tinkering around in his shop for months. He has always been so strong.
He was my support when everyone else was telling me there was nothing that we could do save Elizabeth. He told me I would find a way. He said "We have to save her" He helped me so much with her in the beginning and still at times helps a lot with her as far as keeping her busy. So, needless he has been my rock.  He has just seemed so fragile for awhile now. He is still the love of my life.

Thank you to all that replied to my last update.  I was not even going to post about it and then I did.  My fingers took over. LOL
Thank you for your kind words and for caring!!! 

Many prayers to all the sick kids!!!!!

Keep us in your prayers we need them to keep us strong.

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

Thirty-five years of marriage - Living with SMA

This is a us at our 25th Anniversary party. 
Today is my husband and mine 35th  wedding anniversary. Thirty five years is a long time with one man. We have been through so much together and not so long ago things were looking pretty good for our future at the time of this picture and up until 2003. Then, there was a turning point. I quit my jobs because of an injury to my back . I had worked two jobs. Lizzy was born two weeks before my injury. Then, I did not go back to work because I needed to take care of Lizzy and fight for her.  I will never ever regret my decison. 
Then, Paul was losing his job last year and was laid off most of the month of December and the plant closed down and was sold and he was laid off for good March 5, 2009. He was not hired back because of his union involvement even though his work record was exceptional. The place is getting ready to close here soon we hear again. A Spanish company bought it and they treat employees badly , cut the pay, busted the union etc. We have enough headaches now so maybe it was  good thing he did not get hired back. I just wish he could of found a job soon after his layoff.

Thirty five years ago we had no kids..... we did everything together. Paul was the love of my life. He still is but we get along now like my grandparents did.
I was sixteen years old and married. I remember imagining our lives when we were in our fifties. We are there.  We swore we would be together forever. He rescued me. It does not seem that long ago. Where did all the time go?  Now , he hides out in his shop and I take care of Lizzy and the  house-hold . His health is not so good  these days. I worry about him so much too. Where do we go from here?

Tonight,  I made ribs and my own homemade BBQ sauce for dinner. We can not afford to go out and eat. I am sitting on the home pc and he is on his playing one of Elizabeth's  games right now
 Did I think it would end up this way? Never in a 100 years. If someone told me my life would be like this I would not of believed it.
 I used to be  very arrogant not that long ago . I was very good at everything  I did and that helped me in my jobs.  I did not like that person I was.. but I was secure.  Now, Fat and broke..... Those words hit my heart like a ton of bricks.  I was a "go getter" from the time I young. I also did "beyond the dot thing" "Over achiever at work"  I was called all of the above from my employers.  Now, I worry about if we will have the money to pay the house payment or the electric bills. Does not seem fair does it? I guess they say we make our own destiny. I do not know how I made mine but I  guess I did. I have been crying all day and can not hardly think straight. I did not wake up all upset today. I was in a good mood. I was up early  I asked Paul a question  this morning and he tells me "He is 20 bucks short on the house payment" .  I lost it right there and then. He did not expect this out of me. I figured things out like I always do and we are okay but I did not know things were really this bad. I knew it has been rough but not this bad.  He used to stash money(saved for emergencies) all the time and the" Stash is GONE" and has been for awhile. Taking a deep breath  I know we will get through this.  I know we will.We always do. I know this because I have faith. Faith has gotten me through so much these last 6 years. We believe in miracles because.......
I got to get it together to make it all work.  I have to be there for Elizabeth to make sure she gets what she needs. I have to be there for my family.

Paul is going to trade school here soon and things will be good hopefully in few short months. Lizzy is doing great. We have our home. We have family. I have better friends than I have ever had. That is all that counts.
So, I guess I took the day off to feel sorry for myself and I had no reason to. Wow, what a day wasted.
Thanks for listening.

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

First Snow - Living with Spinal Muscular Atrophy

Its snowing and Elizabeth is just so tickled. She wants to go out side and sled and it just started snowing!! See the blur above that was Pepper pulling Lizzy last year and she wants to do it again!! I have gotten a new camera since this!! My brother and his kind heart got me a new one for Christmas last year.

Lizzy is totally over her last illness and while it did cause her to become much tighter in her joints but with the help of Linda her Myofascial Release Therapist and me working on her she is not so tight. Her back today is straighter also. Thank Goodness. I was worried. She has been pivoting to the one side really bad since her illness while in her power chair. I did stretching every day while she was sick as usual but this time I really noticed how tight she had gotten every where. I need to also get a hold of Tony at Plattners because her TLSO has not fit her right since she has gotten it and she NEEDS new AFOs.

Elizabeth started on some breast milk from a new donor and doing awesome on it. Its very exciting for Lizzy to get newborn donor breast milk.  The new born breast milk contains in the first few days contains colostrum and builds immunities. This stuff is great for Lizzy  Christen met the mom on WED that is donating to Elizabeth.  Another awesome lady!! A former breast milk donor of Elizabeth's set this up for her. We are so excited to have this milk for the winter. She is going to pump for Lizzy as long as she can. We call it "Elizabeth's Miracle blend." made with love.

Elizabeth and I have talked about all sorts of stuff this week. She is so funny and her comment when she doesnt like something or something is not going her way is " nice".   Its too funny.

She is getting all excited about Christmas.

Many prayers for MJ , Jake and Stella as they are not feeling well.
Keep Lizzy in your prayers also!!
"We believe in miracles because we live with one"
www.our-sma-angels.com/elizabeth

"Sense of Deep Love and Caring" Living with Spinal Muscular Atrophy

The "crisp" cold air hit here last night and the "Smell of Snow" stirred my senses.  No snow as of yet here but in the area they did have a few flurries yesterday in surrounding areas. 
The Christmas season warm bubbling inner peace has consumed me. Feels, so great to have that "sense of  deep love and caring" for all your friends and family . These feelings are  so very strong this time of year.  Its the season of miracles. I love this time of year. The warm glowing warmth inside your soul.

Lizzy's ramp is decorated with white lights , garland and red bows waiting patiently for Santa's big entrance. She is so proud it was her idea to do this year.   It will be a wonderful Christmas for Elizabeth.
Comparing last year to this year and seeing how she is cares for so many people, how she remembers so many people and things about them at six is just amazing. She is so wise for her young age.

We have met so many families this year that many have actually looked at Elizabeth as " Hope". For so many babies to be diagnosed and to find "Hope" in that tunnel of fear and heartache is something they need to find to be able to lead a life like we do. Its not a bad life. It is a "Safe Life". We do what we need to do for our own. We also have our inspirations( besides Elizabeth) that keep us fighting for her. We have met so many wonderful people. I have said it before " Never have I ever had friends like I do now". I feel like we are family . We are all a part of each others world.
We have special friends also that are making sure this is a Christmas that Elizabeth remembers. They have touched my heart in ways that leave me breathless to the act of kindness and caring they have shown for her. Thank you from the bottom of my heart. I can not thank you enough.

Elizabeth did not get picked as the IL MDA Goodwill Ambassador but that is okay.  (sigh of relief) We have a VERY busy life( In the Spring& Summer)  any way and even for Elizabeth to be nominated is an honor.
I have never met the new local MDA Goodwill Ambassador or the IL one. They picked boys for this next year.  Its great to actually have a MDA news letter now that gives you that info about the kids and their families. We found out today when we recieved the news letter. We will still help out when needed when we can.


Many prayers for MJ and our friend Jake G and they both are sick.
We have many of you in our prayers. Thank you for those of you in our life.

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

Questions that surprise you - Living with Spinal Muscular Atrophy

"Nina, who is going to take care of me when I am older?" Those words today took me by surprise. Tears flooded my face and I just held her tight. My heart felt like it was going to break. I have tears flooding my face again right now thinking about the moment when Lizzy asked me this today. Wow.... I was not expecting this question from her out of the blue. I told her " I will take care of you as long as I can and then Mommy if I am not around" Then, talking to Christen about this tonight Elizabeth had asked Christen this morning the same thing but added "she wanted to have a brother or sister who would take care of her when we were too old to help her." How can a six year old think about such things? What makes their little minds work like this? Some one will always be in our family to take Elizabeth because we all love her dearly. I will care for her until the day I take my last breath in this world.

Lizzy helped her Dad put up some lights on her ramp. She asked this year if we could do that for her on "her ramp".  So, we asked Brandon to put them up and he did. As you see in the picture above she is overseeing the project to make sure it was done right.

Thanksgiving is over and Christmas season is in full swing. Lizzy begged for snow the other night but only got a few sprinkles on Wed morning. She wants to ride in her sled so bad.
We had a great Thanksgiving with my Dad. We went out to eat with my him and my step mother Roz. He had us put back in a  corner with a huge table and we were alone basically. After, dinner since Kmart was across the street and not busy Lizzy got to run around Kmart having a blast. So, much to be thankful for.

Friday..... let me see uh.... I lost my mind for hours. I had three extra  grand-kids here. I love them  all but........ not all at once. I am still finding things they got into. Today, I am back to earth again. Paul hid out in the basement in his shop while they were here. Chicken.

We are having our family Thanksgiving tomorrow at Dawn's

Elizabeth  has been doing well now since WED and finally over that  bad sinus infection.

Thank you for all that asked about Lizzy doing her illness and added her to your prayers.

Many prayers for our friends Hannah and MJ who are very sick.

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

People in our Lives we are Thankful for - Living with Spinal Muscular Atrophy

Elizabeth is a bit better but still plugging. She is still on every three hour treatments.  Those treatments wee hours in the morning are kicking my hiney. I could not tell you when I have gotten 7 hours straight sleep.  I hate it when my girl is so sick. DR.Schroth put Elizabeth on another antibiotic on Saturday. She says Elizabeth has a bad sinus infection. Elizabeth did insist on sitting in her power chair today for an hour. She did well.

Elizabeth has been doing a lot of school work with her learning videos and is a sponge. She loves her new science Soft ware THINKIN SCIENCE. Very cool program. Teaches kids about animals and all sorts of things. She loves it. She had to call her mom today at Dawn's and tell her all about what she learned. Is that not precious?


The stove we got given to us works like charm. I cleaned it up and switched the oven racks and it works GREAT and looks great. Love it. I am still awed at how we got it so quick.  All we had to do was pick it up about 30 miles away and clean it.  It has more features than my other one did. Its not that old either. I am telling you somebody up there is watching out for us.

Paul did put the toilet back in the bathroom down stairs today since Brandon FINALLY finished the tile on Sunday but some how it was cracked. So, we have to buy a new toilet. Better to buy a new toilet than a new stove. I will take the good we have been having and not complain about the bad.

Paul  is going to take classes here soon for heating and air conditioning. Maybe he can get a job around here. Things might be turning around here before long. He has aged so much and his stress level has been very high. The only person he has patience with is Elizabeth. I am very worried about him.

Good things have been happening to us lately and special things in Lizzy's life too. Believing in miracles as well as blessings help get me through each day.

We have a new donor for Elizabeth for breast milk and we are so very excited. One of her previous donors( an awesome great lady) from last spring asked a friend to help Elizabeth. That itself is a miracle. Keeping her the amount she needs each day is something I always worry about. She does so well on the diet she is on I hate to cut her back on the breast milk.  Now, I will not have to!! That is such a relief!!  She sounds like an awesome lady. Lizzy's angels are working hard lately watching over her.

Thank you for all of you that care about Elizabeth. Elizabeth is such a special child. I will say it again to have her in my life is a gift. You need know her if you don't.  She is an amazing child. She is so wise for her young years. We have several conversations daily about all sorts of topics.

Keep Lizzy as well as the other sick kiddos out there in your prayers.

We have a lot to be thankful for. The people that have come into our lives are so very special to us. I am thankful for all you that are so dear to us. You are amazing people and each one of you are in prayers.


"We believe in miracles because we live with one"

www.our-sma-angels.com/elizabeth

Divine Intervention- Spinal Muscular Atrophy

Wow, today is Friday. I didn't not even know what day it was this morning. Isn't that funny? My world seems to stop when Lizzy is sick. Around the clock treatments and worrying about her consume my inner- being.  I think my age is kicking in because I have needed help in the wee hours of Thursday morning to get a huge plug out of Lizzy and had to wake Christen up to help me. I had just  got a treatment done and Lizzy had plugged. I was so exhausted I needed help because I was not getting it out on my own.
I used be able to stay up for days with out sleep. Not any more. Elizabeth has no fever only junk in her nose and trunk now


To add to my already stressful week my stove decided to run the broiler  on its own when its off and even when it just plugged in. Its runs constantly. You can not shut it off. Scared the bejeepers out of all of us. Weirdest thing I ever did see.  How could  stove just run on its on when shut off. Its quit after it was unplugged. Its a smooth burner top stove and not that old. It probably shorted out.  I dont know I just want the thing gone before I try to use it and it causes a fire or something. So, I went online  late last night to see if I could find one cheap on Craig's list because we can not afford to get this fixed. No way  we can do this at this time in our life buy a new stove. Its too tight here money wise. Well, I put an ad on Craig's List  and this wonderful man emailed me back from about 30 miles a way that is going to GIVE  me a stove to get it that he bought 2 years ago and never did use it. He said its in his way in his garage.  It tis season of miracles. I truly believe in the power of prayer. Divine intervention. God works in mysterious ways. Its a stove that is very similar to mine and the same color as my fridge. My appliances have not been the same color since my fridge that cost me around $1200.00 brand new after 4 years quit working about 6 years ago.

The kindness of people hearts the past 6 years  just surprise me. Another thing happened recently that also makes me believe in the power of prayer and miracles. I think since caring for Elizabeth I have become so much more spiritual. I pray with Lizzy every night. I believe that Lizzy's angels that watch over her and God are actually looking out for us in our times of deep need. How else do things like this happen? Divine Intervention is what I believe it is. This man was so great to do this for us.

Many prayers for all our sick friends.

Keep Lizzy in your prayers

"Believe in the power of prayer"
"We believe in miracles because we live with one."
www.our-sma-angels.com/elizabeth

Illness update on Elizabeth - Spinal Muscular Atrophy

Not much change in the last 48 hours. Elizabeth did say her throat is not hurting so bad. Today she is VERY WHINY and having major hissy fits over nothing. No pleasing her today. She is miserable. Poor sweety. Typical sick six year old.


I have not been online too much this week. Treatments and home schooling is about all I am able to do. She still wants learn even though she is sick. She takes a lot of attention these days and being sick takes even more. I am not complaining believe me its just fact. I seem to be the only one around here with patience. Paul has helped with Lizzy so I can do dishes laundry etc. here and there

 She has had no fever and she is on antibiotic now.  It is a cold or sinus infection. Runny nose and sore throat. Her air movement is good but she has sinus drainage and its causing her to cough . She does cough on her on own sometimes but it is not productive enough to get the junk in the back of her throat out.
Keep her in your prayers.
 
MJ is also not feeling good and we are very worried about her. Lizzy said "MJ has been sick a long time cant they make her better? " She added she needed to see DR.Schroth. Well, I explained to her that MJ lives far away from DR.Schroth. We have had MJ is our prayers please add MJ to yours too.
 
Our friend Charlie has been sick, Sophia has been sick, Aaron has been sick, Madison has been sick and so has Hannah. Please add them all to your prayers.
 
I have added an email from Brenda MJ's caregiver:



From Brenda MJ's care-giver:




This is Brenda emailing from Nationwide Children's Hospital in Columbus, OH yet again. I am writing to get your help.



MJ was re-admitted to the hospital after 2 weeks at home after battling H1N1 at home, along with a lung infection (psuedomonas) and a GI virus. Right now, MJ is battling pneumonia, the psuedomonas, and an UTI. The doctors have decided to give MJ's belly a rest and she is now off GI food and getting food via her veins (TPN). MJ has been refluxing since then (we guess her belly really wants to eat or something, but it is clearly not happy.) She has aspirated some of the reflux as well - hence the pnemonia.



Anyway, MJ's doctor (Dr. Shell) issued MJ a challenge....to get 80 cards sent to her by tomorrow. Cards are printed out around 9am, so he issued MJ a challenge. Upon card delivery tomorrow, there should be 80 cards brought up. He does not believe that 80 people would send MJ a card. Lets show him how wide and big the world is. Please help and show Dr. Shell how many people MJ knows. Send it on to your friends too. Thanks.



1. Go here to create a card (http://www.nationwidechildrens.org/gd/applications/greetingcardpro/choosedesign.cfm)

2. Choose a card from the selection

3. On the next page, you have the option of using the default image, choosing from the ‘card’ gallery, or downloading a picture (one of your own or one from the internet)

4. The info you will need:

Patient’s first name (top line) - MJ

Patient’s full name - MJ Purk

Patient’s room number - T5103



NOTE: Any cards not printed tomorrow morning will be printed Wednesday, which will be great, too.



That’s it - and feel free to pass the info on!



If you prefer, real cards can be mailed to:

Nationwide Children's Main Campus

c/o MJ Purk, Room T5103

700 Children's Drive

Columbus, OH 43205
 
 
 
"We believe in miracles because we live with one"
www.our-sma-angels.com/elizabeth
 
 
Please watch a news story about our friend in Canada named Shira:
http://www.youtube.com/watch?v=8DVvfDm2Q_Y&feature=player_embedded

Illness Strikes - Spinal Muscular Atrophy Type 1

Lizzy woke up this morning with elevated heart rate, sore throat, running nose and some plugging. No fever. I have been doing treatments every 3 hours and just put her on her miracle food mixture of unfavored pedilite/ breast milk/tolerex.  The weather here can not make up its mind so I am not sure if that is the cause or what. We have been so careful washing our hands and keeping any one sick away. So, even living in the "bubble " is not always the answer. I have not left the house unless I am with her at her Myfascial Release appts. They totally disinfect everything before Lizzy goes in for treatment. 
Not sure what is going on. 
So, please add Lizzy to your prayers.

Jake is still in the hospital ,MJ is not doing so great, Charlie is not feeling well, Madison is sick and so is Hannah.  So, please say a few prayers for them also.

"We believe in miracles because we live with one"

 www.our-sma-angels.com/elizabeth

Visiting Memory Lane - Spinal Muscular Atrophy

Sorry, no updates for awhile. I have been very busy with Lizzy teaching her how to read and teaching about all sorts of  things. I am liking this "teaching thing" very much now once I  got things figured out on what she needs to learn and how to introduce her to things.


She is doing great with the Myofascial Release therapy. Elizabeth said its making her feel so much better. I am learning how to do this myself. I still have a lot more to learn.

Christmas ads are every were you look!!  They have been since the day after Halloween. Its a wonderful time of year but this year.... (sighing) it is coming too quick and Paul still has not found a job so it will be the roughest Christmas for us since 1978. That is the last time Paul had been with out work for a few months and had just started a new job at Interlake. We had just paid rent and utility bills. We just moved into a new house. I took every cent we had to buy Dana (Our only child at the time) a $5.00 doll on sale at Osco Drug in the mall. It hurt. It actually still hurts that was all we could buy her. I was pregnant with Dawn . Those feelings that pained my heart, made me sick to my stomach and gave me cold shivers come easily rushing back just thinking about this time in my life.  Not being able to buy your 3 years old daughter anything but a five dollar doll was hard.  It was a lot of years ago. I guess it should not upset me so much thinking about it now but it does. We had a roof over our heads, we were healthy and doing everything we could for our daughter.   I was so very young. I was 20.  Me..... 20 years old. I thought I knew it all. I felt like I had life by the balls. Picturing me as 20 in my head is hard to do now. If you could do it all over again what would you do? Anything different? I am sure we all would. I would not for a second take back my kids but I would of done a lot of things different. I guess we are who we are because of the things we lived and learned.
Thinking about my mom back then. Wow, she was working and the head of the Nurse's Aids at the nursing home and doing so well. She was so strong back then. She had stayed well for many years. Not long after that she had another break down. She had many mental break downs while I grew up and I spent a lot of time with my aunt and my Dad. I do not know what happened to her. Why was she like this? I know what we were told  but why how can an adult woman with children just lose it? She lost all concept of reality. My kids to this day worry about her when she says something off the wall.  I swore at a very young age I would NEVER be like her.... ever. I think that is why I can live through so much and still remain sane. Things may keep me awake at night thinking about them or I get stressed out but I have never lost touch with reality.  I am nothing like her and I am so glad.  I do love my Mom. I guess thinking of what went through as child also makes me who I am today.
Alrighty then.... I am done visiting memory lane.  Some memories that still hurt to think about them.



Elizabeth is doing pretty well. Her O2 at night has been 99-100% and her heart rate has been so much lower while she sleeps. She is growing up too darn fast. She is so darn cute and the stuff she says will shock you.

She listens to EVERY THING and does not forget anything!!

We are so sorry to hear of so many sick people . My sister Rita called today. She is a nurse at her local hospital Florida and she is so sick. Sounds like the H1N1. Jake is still in the hospital unless he went home today. We are in our Bubble still. I talked to a Mom I know in Florida yesterday their 13 year old with SMA Type is sick.


Many prayers to my sister Rita, Hannah Price, Jake Goodson, MJ and all those who are ill.



"We believe in miracles because we live with one"

www.our-sma-angels.com/elizabeth

A Long Week - Spinal Muscular Atrophy

Lizzy looks chunky in these pics but honest its her TLSO under her shirt!!

I am sitting here thinking about the week.  You think the sun could shine just a few more days a week. Its been cloudy all the time it seems.  I am really tired. Not sure why.  Maybe  from not much sunshine even though I am using 2000 IU of D-3 .  Its been a long week. I am just plain tuckered out.

Dawn found out she had Mono, Corbyn just got over Roseola, Caitlyn just got over H1N1 and Lizzy well....  she has been pretty good week after a scare on Monday night.  She was alarming and scared the bijeepers out of me. I was so afraid she was getting sick but to my surprise it was her bipap. I started using her back up bipap and all is well. She told me her bipap did not feel the same and she could not breathe as well. Changed it out and all is well.  I am so thankful she can tell me these things. The back up bipap had been fixed after it went out awhile back and we have not used it. It is working fine now. Thank goodness.

You know I keep asking myself why so many medical professionals "dis" the Amino Acid diet that many of the  SMA kids are on. I am not understanding this. Why are they not believers?  So, many kids that are using the diet correctly ( Double diluted ) with supplements seem to be doing so well. Why is it so hard to accept? Just the fact that the NIV Protocol for SMA and the Amino Acid diet have helped these kids get stronger and they are living longer should be proof enough.  I get so upset when I hear a medical professional has not given this diet a chance.

We still have not heard from Medflight about our canceled flight diet due to the H1 N1 National Emergency.  Hope we can fly in April. )Oh April..... Spring can not wait!! )

Elizabeth has been full of it all week. I am loving it. She is just a great kid with so much to say.
She is doing so well with the myfascial release. She seems to be moving a lot more. I am glad we made this decision to get her this therapy.


Many prayers for all the kids sick!!
Prayers for MJ, Karah, Stella, and Jacob.

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

Soaking up some Vitamin D - Spinal Muscular Atrophy

Just a real quick update on Elizabeth.
I took Lizzy out-side today to get some sun. Its been raining here a lot so we do not get out side much. It was warmer than it has been today and her and I needed to get outside.  She drove around the yard and on Becky's drive way, up and down the ramp many times then she spotted a Monarch butter fly. She was amazed and asked all sorts of questions about the butterfly so after we came in we learned all about butterflies.  She told her papa after our lesson and talking about butterflies on how they are caterpillars, they eat a lot then..... they build a house called a cocoon, then they take a long  nap and wake up and become beautiful butterflies. She listened well.

We have been very careful not taking Lizzy any where in public even though she did have her H1N1 shot. She gets her booster in for few weeks. I still am worried about her getting the virus.
Christen and Brandon went to give a presentation at the Bloomington Fire Dept for the MDA tonight. The fire dept raised around$ 8,000 all together for the MDA.   Good job!! Brandon and Christen talked about what the MDA does and what the MDA has done for Elizabeth.
Lizzy and I stayed home . We did school work most afternoon except when we went out-side . She soaks up everything up so well but teaching her to read has been a challenge. She can so stubborn and very selective  on what she wants to learn.

Caitlyn is getting better and Corbyn is getting better also. He has Roseola. He still has the rash but his fever is gone.

Many prayers for our friend Jacob that has H1N1. He is in the hospital intubated in N.C. He is also has Type 1 SMA like Lizzy.We see him at Stanford and  we spend time together at CCK in Kentucky. We are very worried about the little guy. Get better quick Jake.

Many prayers for all the sick kids!!

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

"Our Genie, Michael Jackson, Devil girl and the big lady" ( Spinal Muscular Atrophy)

Lizzy has had a good day handing out her body parts candy, toe jam cotton candy,boo boo bandaids candy, bags of blood candy and other treats. Lizzy is something . She and her mom were looking at all the candy at Oriental Trading awhile back had online and she wanted all the bloody gore stuff. So, Christen ordered it for her. She has a huge sense of humor.  I love it!!  She laughed about it all and laughed when she handed out her bags of gore today.

Lizzy asked me to make up her eyes and I did for her genie costume and she was so excited.
We had the a devil girl(Rachael) and Michael Jackson (Robby) stop by. Robby was Michael Jackson and looked awesome!! 

Caitlyn tested positive for influenza yesterday she was unable to to go out for Halloween . Christen took ( dropped  it off  on door step) her the new Tinkerbell movie and a bag full of candy so her day was better.  Caitlyn was so upset she was sick and could not go trick or treating.  Caitlyn got Corbyn a toy and some things he can eat too. Caitlyn is on tamiflu and doing  a lot better today. Many prayers their way. Corbyn tested negative but he is sick also.

Christen & Brandon took Lizzy out to some relatives and good friend's house trick or treating tonight. Well, when Christen was with Rachael Brandon had Lizzy in the van at somebodys house Brandon's Mom came up and saw Elizabeth for the first time in over 4 years. The woman lives 5 blocks away and never sees her or even calls. We do not talk about her. We leave it alone.
Well... Elizabeth tonight shocked me.  After Brandon left  shetold me "There was this big lady that came seen her in the van with some kids with her that took her picture".  I said "It was Grandma Debbie". She said "  It wasn't. "It was some big lady with kids."  She did not even know who her own Grandmother was.  Is that not sad or what? It hurts me that woman has alienated Elizabeth like she has. Lizzy said "I  did not know who she was but said she did not like her" . Hmmmmm ya think??
We do not worry about it.  Lizzy is happy just the way things are with the people in her life. 

Any way, Lizzy had a good night being a "Genie".
Happy Halloween.

Prayers for all those sick.

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

"Doing the Happy Dance" (Spinal Muscular Atrophy Type 1)

We have great news. We are not flying to Stanford this month. I can actually breathe easier and sleep easier. DR.Wang said "we can wait till Spring" . I am doing the "Happy Dance". Yes!!!  God is watching over us. Lizzy's angels are watching over us too.

My fear of flying was real because of the H1N1 virus and all the different viruses out there. "Sigh of  Relief" . We can remain safe in our bubble.

We are now going out to CA in April and then he wants to see us in June again. So, we can go to the conference too. From what I understand he we would like  us to attend the FSMA Conference.  We are also excited to meet all the people out there we have not met in the past and spending time with our friends from out there. I told Lizzy we pretty sure we are going to the conference this year and she squealed in delight.  We will be in California for a week. June is beautiful out there. Not to hot and not too cold.  Now.... do we fly or not? If Lizzy is with out her power chair she will be VERY upset. Her chair is her legs and being with out even for a few days is hard on her.  I do not want to drive to CA again but what else are we to do?  Now,  if Paul has a find job and can not go we are in trouble. We can also go alone but the traveling pace will be a lot slower. Some how some way we will get there. I have faith.

Christen is a bit better today. She has Bronchitis , ear infection and sinus infection. She has on antibiotic for two days now and feeling much better today.

Lizzy started Myofascial release yesterday. I am also being taught to do this while Lizzy is getting this. I am so excited that I am being taught this.


The difference in Elizabeth while she was doing this today was unbelievable. I could feel the release in her muscles. It was so calming to me also. Lizzy moved every single finger individually. She was so quiet. Lizzy is hardly ever quiet.
Its kind of expensive an hour ( For our income right now) but to learn this at the same time its worth every penny. It is my neighbor who does this at her office. She had her office disinfected before Lizzy came in yesterday and no other patients in or out before and after.

Myofascial Release: is a very effective hands-on technique that provides sustained pressure into myofascial restrictions to eliminate pain and restore motion. The theory of Myofascial Release requires an understanding of the fascial system (or connective tissue). The fascia is a specialized system of the body that has an appearance similar to a spider's web or a sweater.
Fascia is very densely woven, covering and interpenetrating every muscle, bone, nerve, artery and vein as well as all of our internal organs including the heart, lungs, brain and spinal cord. The most interesting aspect of the fascial system is that it is not just a system of separate coverings. It is actually one structure that exists from head to foot without interruption. In this way you can begin to see that each part of the entire body is connected to every other part by the fascia, like the yarn in a sweater.
Fascia also plays an important role in the support of our bodies, since it surrounds and attaches to all structures. These structures would not be able to provide the stability without the constant pull of the fascial system. In fact, our bones can be thought of as tent poles, which cannot support the structure without the constant support of the guide wires (or fascia) to keep an adequate amount of tension to allow the tent (or body) to remain upright with proper equilibrium.
In the normal healthy state, the fascia is relaxed and wavy in configuration. It has the ability to stretch and move without restriction. When we experience physical trauma, scarring, or inflammation, however, the fascia loses its pliability. It becomes tight, restricted and a source of tension to the rest of the body. Trauma, such as a fall, whiplash, surgery or just habitual poor posture over time and repetitive stress injuries has a cumulative effects. The changes they cause in the fascial system influence comfort and the functioning of our body. The fascia can exert excessive pressure producing pain or restriction of motion. They affect our flexibility and stability, and are a determining factor in our ability to withstand stress and strain.
The use of Myofascial Release allows the therapist to look at each patient as a unique individual. One to one therapy sessions are hands-on treatments during which therapists use a multitude of Myofascial Release techniques and movement therapy.

Lizzy and her cousins Rachael and Robby carved Pumpkins tonight. Lizzy was so excited!! She decided she wanted a Micky Pumpkin. She actually loved pulling the slimy gunk out of the pumpkin.  Last, year she was like "WASH MY HANDS NOW ewwwwwwwwww" She is like that usually but not tonight.
Lizzy is doing good. Growing and as usual  always doing something or saying something to make me laugh.  She is my heart. She NEVER stops amazing me.

Many Prayers to all the sick kiddos . We heard our friend Brianna is in the hospital with  a high fever. Drew is also still sick. Keep them in your prayers!!   Keep us in your prayers too. The power of prayer is so strong.

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

"People sometimes just shock you" (Spinal Muscular Atrophy)

You know sometimes people just shock the heck out of you. Today, Christen was on the phone with Jonathan at Stanford when DR.Wang walked in. Christen's fear as mine was flying with H1N1 being so wide spread , Lizzy not having her booster for the H1N1 until Nov.18 and the bipap issue. So, DR.Wang says he does not want us to fly until its warmer. I guess that is Spring? I was shocked... floored totally taken by surprise. Now, the big question. Is DR.Wang going to let us get the medicine from there even though we did not fly? Med Flight threaten us with being penalized if we canceled this flight. We were sick in March with a bad flu and they just have to understand we are only human. People get sick and things happen.  You have to take precautions with a child with Type 1 SMA. We drove out there in July because of the FAA regulations with the bipap. Jonathan said "DR.Wang is writing a letter to Medflight to help us." I hope it works.  The flight was booked this month with out medflight even asking us if the flight time would be okay. When, Gene was there this would of NEVER happened or have we ever been treated so badly.  This new guy that is just plain mean and cocky that books the flights. He says "He calls all the shots"  We had  7:15 am flight at O'hare 2 1/2 hours from home (when traffic is good) . We would of had to stay up all night to make that flight. I do not want to sound like a whiner....But my gosh people have a heart. I thank God they help us but they have to UNDERSTAND our life is not an easy one and sometimes you need to ask us if we can make a flight before booking us. We need to take precautions for the safety of Elizabeth.


On good note I have a shocker to tell. Lizzy is having a benefit to help us with out of pocket medical expenses, travel and other things Lizzy needs in Jan.
Elizabeth's dad's Grandmother and her friends from the Moose decided to do one for Lizzy.  My emotions are still taking over and tears are once again today flowing from my face when I heard this.  The funny thing is they got a local biker club to donate their club house and open bar for the event. I am still in shock. Bikers and a bunch or elderly ladies coming together to help Lizzy!! Visualize this in your head. My Gosh.  Lizzy has touched so many lives and so many people are good to us because of her. Elizabeth's Dad immediate family does not have anything to do with Elizabeth but his Grandmother has for the past 4 years after she found out about Lizzy. She is a great lady with a heart of gold. 
Christen went to Prompt care tonight and has ear infection, Bronchitis and allergies. So, its not viral but I am still treating it as such. Add her to your prayers,

Many prayers to our friends Kaitlyn, Drew,MJ and all those sick people with H1N1.

Thank you for keeping us in your prayers!!

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

"Living in the Bubble " (Spinal Muscular Atrophy)

I am starting to feel very confined.  You know the " Caged Cat Scenario" . I am freaking out at anyone coming into the house. Some body uses the toilet I am in there disinfecting it less than 2 secs after. I am constantly wiping the phones off before I use it. I am bleaching the silverware! I am being a freak.  I wipe door handles etc I just fell into  "germ phobic"category ..... I am an "Antiseptic Grandma". I  armed and loaded with hand sanitizer in my pocket. I stand at the back door when some-one comes in and make them wash their hands.
I have always been a bit cautious but this H1N1 scare has me confined in my house and disinfecting anyone coming into the house.
Man, we need a good COLD winter to freeze and kill all these nasty GERMS!!
We fly out to CA on the 9th of November and I am freaking out so bad I can not sleep. Worrying about us catching something or giving somebody something. Worrying about Lizzy and the bipap situtation. UGH. If I had the money we would DRIVE. It would be safer. We could control a lot of the germs that way.  We would have to take the long route but I feel so much safer. I know its a long ride but we would do it if we had the funds to go. Last trip was about 2500 with food motel, gas etc. That was being very conservative.

Christen caught a viral infection from Corbyn and my son inlaw Jeff. Not bad but still a cold. I am so afraid she will some how no matter how careful we are get Lizzy sick.
Keep us in your prayers!! We pray for all those sick right now to make a full recovery.
"We believe in miracles because we live with one"
 www.our-sma-angels.com/elizabeth

National Emergency H1N1 (Spinal Muscular Atrophy)

Christen, Elizabeth and I had our H1N1 shots last Wed. We had miminal side effects.  Just hydrate yourself very well the day of the shot and the day after. Its causes dry mouth. We all three had this side effect.

Please contact your local health dept to see when the next clinic is to get the H1N1 if you want to get the vaccine.

From AOL :

ATLANTA (Oct. 24) - President Barack Obama declared the swine flu outbreak a national emergency, giving his health chief the power to let hospitals move emergency rooms offsite to speed treatment and protect noninfected patients.


The declaration, signed Friday night and announced Saturday, comes with the disease more prevalent than ever in the country and production delays undercutting the government's initial, optimistic estimates that as many as 120 million doses of the vaccine could be available by mid-October.



Health authorities say more than 1,000 people in the United States, including almost 100 children, have died from the strain of flu known as H1N1, and 46 states have widespread flu activity. So far only 11 million doses have gone out to health departments, doctor's offices and other providers, according to the Centers for Disease Control and Prevention officials.

Administration officials said the declaration was a pre-emptive move designed to make decisions easier when they need to be made. Officials said the move was not in response to any single development.

Health and Human Services Secretary Kathleen Sebelius now has authority to bypass federal rules when opening alternative care sites, such as offsite hospital centers at schools or community centers if hospitals seek permission.

Some hospitals have opened drive-thrus and drive-up tent clinics to screen and treat swine flu patients. The idea is to keep infectious people out of regular emergency rooms and away from other sick patients.

Hospitals could modify patient rules — for example, requiring them to give less information during a hectic time — to quicken access to treatment, with government approval, under the declaration.

It also addresses a financial question for hospitals — reimbursement for treating people at sites not typically approved. For instance, federal rules do not allow hospitals to put up treatment tents more than 250 yards away from the doors; if the tents are 300 yards or more away, typically federal dollars won't go to pay for treatment.

Administration officials said those rules might not make sense while fighting the swine flu, especially if the best piece of pavement is in the middle of a parking lot and some medical centers already are putting in place parts of their emergency plans.

The national emergency declaration was the second of two steps needed to give Sebelius extraordinary powers during a crisis.

On April 26, the administration declared swine flu a public health emergency, allowing the shipment of roughly 12 million doses of flu-fighting medications from a federal stockpile to states in case they eventually needed them. At the time, there were 20 confirmed cases in the U.S. of people recovering easily. There was no vaccine against swine flu, but the CDC had taken the initial step necessary for producing one.

"As a nation, we have prepared at all levels of government, and as individuals and communities, taking unprecedented steps to counter the emerging pandemic," Obama wrote in Saturday's declaration.

He said the pandemic keeps evolving, the rates of illness are rising rapidly in many areas and there's a potential "to overburden health care resources."

The government now hopes to have about 50 million doses of swine flu vaccine out by mid-November and 150 million in December. The flu virus has to be grown in chicken eggs, and the yield hasn't been as high as was initially hoped, officials have said.

"Many millions" of Americans have had swine flu so far, according to an estimate that CDC Director Dr. Thomas Frieden gave Friday. The government doesn't test everyone to confirm swine flu so it doesn't have an exact count. He also said there have been more than 20,000 hospitalizations.
 
 
"We believe in miracles because we live with one"
www.our-sma-angels.com/elizabeth

"We did it. We got it and All is well" (Spinal Muscular Atrophy Type 1)

Lizzy got her H1N1 shot today. I gave her some infant Motrin before we left and the so far she is fine. Its was uneventful for a change.  The nurse came out to the van and gave her the shot so we did not have to go through what we did last week. The nurse told us Lizzy has to have a booster Nov.18. With all the H1N1 all over the place it was what we had to do. I was so much against the shot but... after researching and talking to health care professional I think we made the best choice for us.
I will keep every-one updated on side effects but so far thank goodness all is well.
 Elizabeth at this very moment is playing on her pc a game that is a teaching game and so far she likes it.

Prayers to all the sick kids and those dealing with a new diagnosis. Please do not give up. You need to find hope. "Hope" is what has kept us fighting for Lizzy.  Pray and Thank God for  your gifts. Lizzy is my gift.
 I whisper in Lizzy's ear every night right after she falls asleep since she was an infant " You can do any thing. Some way some how" She does too....

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

Staying well and in our bubble (Spinal Muscular Atrophy Type1)

Our H1N1 shots are in. Okay.... with the recent scare of that virus being EVERY WHERE we are getting our shots. I worry about Lizzy getting the shot so close but we are flying out Nov. 9 for CA.  Lizzy will get hers in our van. No more exposing her to ANYTHING out there. It takes 8-10 days for it to even help.  We will have it about 18 days before we fly so that makes me feel a bit better. No place worse to catch something than a plane.  I do have an email into DR. Schroth about getting the shots so close together but I read online you can get them together. I just want to make sure Lizzy will be ok.

Lizzy was doing school work all day today on her computer. We took a few breaks.  She is loving it now. That took forever her to even want to do school work over 3 hours. Christen and I both helped her. It was great having Chisten home today.  We let Lizzy think it was her idea to keep working. There are some great learning web-sites out there at Kids sites . Also one of my favorites for Lizzy is Starfall.

Here is some info on staying well I got in an email a few weeks ago I thought I would share.

1. Frequent hand-washing (well highlighted in all official


> communications).

>

> 2. "Hands-off-the-face" approach. Resist all temptations to touch

> any part of face (unless you want to eat, bathe or slap).

>

> 3. *Gargle twice a day with warm salt water (use Listerine if you

> don't trust salt). *H1N1 takes 2-3 days after initial infection in

> the throat/ nasal cavity to proliferate and show characteristic

> symptoms. Simple gargling prevents proliferation. In a way, gargling

> with salt water has the same effect on a healthy individual that

> Tamiflu has on an infected o ne. Don't underestimate this simple,

> inexpensive and powerful preventative method.

>

> 4. Similar to 3 above, *clean your nostrils at least once every day

> with warm salt water. *Not everybody may be good at Jala Neti or

> Sutra Neti (very good Yoga asanas to clean nasal cavities), but

> *blowing the nose hard once a day and swabbing both nostrils with

> cotton buds dipped in warm salt water is very effective in bringing

> down viral population.*

>

> 5.. *Boost your natural immunity with foods that are rich in Vitamin

> C (Amla and other citrus fruits). *If you have to supplement with

> Vitamin C tablets, make sure that it also has Zinc to boost

> absorption.

>

> 6. *Drink as much of warm liquids (tea, coffee, etc) as you can.

    *Drinking warm liquids has the same effect as gargling, but in the

reverse direction. They wash off proliferating viruses from the
 throat into the stomach where they cannot survive, proliferate or do

any harm.



 I suggest you pass this on to your entire e-list. You never know 20

 who might pay attention to it - and STAY ALIVE because of it.

Many prayers to all the sick kids.

Keep us in your prayers. The power of prayer is still very strong.

"We believe in miracles because we live with one"
"Being defeated is often only a temporary condition. Giving up is what makes it permanent"
www.our-sma-angels.com/elizabeth

Common Sense (Spinal Muscular Atrophy Type 1)

Elizabeth got her seasonal flu shot finally on Wed at the Health dept. Got a call from the doctor's office telling me I could not pay for Elizabeth's shot because she gets medicaid. I was one furious grandma. They told us that the shots were available at the Health dept on Wed from 8am-5 pm .

Christen and I walk in the health department on Wed . Christen was carrying Elizabeth and at my DEMAND Elizabeth had mask on her face. Talk about everyone freaking out because Elizabeth had a mask on. So, we were asked by three different people( That work at the health dept) if Elizabeth was sick. No... we are just being careful so she does not get that way. As, we were sitting (Me holding Lizzy now)waiting to get Elizabeth's flu shot a child that just came out of the room (we were next in line to go in ) coughing like crazy.... My gosh..... Okay ,we are freaking out now.... Then, a family with Mom, Dad and two kids came in and the toddler boy had pajamas on at 3pm in the afternoon and you can just look at him and see he was sick. Glassy eyes, Flushed face......ugh... Okay, taking a deep breath at that point holding Elizabeth closer to my chest......Then.... the Mom says" can he get his flu shot?" "We took him to the ER and he has croup... and fever.... " At that point I was ready to take Lizzy and RUN out that door. Thinking to myself" Why are they making us come out here to get her shot? Knowing that it would be full and most of the time full of people with illnesses with out common sense." My gosh is this just bad dream or what ? Are people really this ignorant. Thank goodness at the moment when my face was turning beet red because I was furious we have a nurse say I can take you in my room. Then, after she saw the mask on Lizzy she says is she sick? Ohhh Lord help me here I am ready to just blow up..... Then we proceed to tell her about WHY Lizzy is has a mask on her face. Then.... ( oh gosh you will not believe this one) The nurse coughs..... yeah coughs and says" Oh I have a cold.... it your choice.  No you want me to give her the flu shot or I can get some one else". At that moment I am carrying Lizzy and backing towards the door. almost tripping over my shoe string. ... My face even redder I just want to run.... HELLO...... didn't you go to nursing school. You do not come to work with a bad cold at the health dept and administer shots..... (Okay ..... somebody wake me up this has to be a bad dream.) Christen and I say at the same time "Absolutely NOT !"

They put us back out in the waiting room with the kid with the fever with the croup and another child that was waiting for her siblings  that was coughing . At that very second I was feeling like I just wanted to SCREAM!! The door behind us opens and its a nurse that knew Lizzy when she was first diagnosed and says "Hi guys haven"t seen you in awhile. I haven't seen Elizabeth pics in the paper since the Spring. " come on in I will give Elizabeth her flu shot. She talked to us about Lizzy and sick kids out in the waiting room and led us out the back way. Thank you God for getting somebody with a heart and common sense.

Lizzy had bad secretions until today. I gave her extra fluids and pedilite but no other side effects.

The schools here are full of H1NI . The doc's office has masks and germx out side there main entrance and you have to use the Germ-x and the face mask if you have any of the symptoms like fever, cough, temp etc.
WE ARE basically living in a bubble right now. Lizzy and I can ride in the van we just can not talk to anyone or get out.

We were not going to get Elizabeth the H1N1 shot but found out from the nurse that did Elizabeth's flu shot that its the same base as the season flu shot with the dead H1N1 in it. Then, one of Elizabeth's program directors said the Nurse can come to the car and give Elizabeth her H1N1 shot at the Health Dept. soon as they are available in the shot form.  Thank goodness.

I had a lady from Chicago contacted me because she had heard about Elizabeth from one of our former donors through a web-site. She had some breast milk from not long after her twins were born she wanted Lizzy to have it because there was way too much for her twins that now weigh about 4 pounds. They were around 2 pounds when they were born. The sweet babies are still in the NICU . Yes!!  Lizzy needed a little boost. Thank goodness some great milk for Lizzy with all those extra antibodies from a mother of preemie twins. She had blood tests and she is very healthy. She said she would get more blood tests if we wanted her to. So, Christen, Lizzy and I went to Chicago today to go pick up the milk today. She lives down town . Lizzy and I sat in the van and Christen went  and got the frozen breast milk. They were painting the bathroom down stairs here today, laying tile and Paul asked us to leave. Her and Christen talked for while. I am glad they invented cell phones. I had to call and ask Christen of she forgot we were there. I can understand. They think the babies will be special needs babies or one of them. The docs are not sure yet. Bless their hearts. So, Christen was helping her with resources. Mom is already ready to do what it takes to get these babies home and get them what ever they need.

We got the confirmation for our flight to CA next month.... 7am in Chicago our flight leaves for CA. We will be awake all night the 8th because we have to drive 2 1/2 to Chicago..

We do not even know if Lizzy's Bipap will be able to be used on the flight. That is another story. Pray for us

Thank you for all of you that care about us. Many prayers for all the sick kids!!

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

www.our-sma-angels.com/elizabeth