Life goes on as usual (Spinal Muscular Atrophy )

Lizzy saw DR. Hough yesterday and no sinus infection, No Psuedomonas , no nothing she is fine. The problem was the new nasal prongs Lizzy has been using. I had quit using the nasal prongs two days prior to her appointment and no blood at all yesterday. The nasal prongs were causing her too much pressure and that is what all that was about last week. I thought maybe but not sure. She can probably wear them while she is sick during the day (which might be great since she refuses to wear a bipap when she is sick during the day) but hopefully she does not get sick for a long while. She loves the nasal prongs though so that is a good thing. It upsetting she can not wear them all the time. Maybe we will try them a bit at a time.
She has gained over 2 pounds since September. I am shocked. I knew she gained though but not that much. She has gained so much muscle mass in the last few months and has grown like crazy.

We have been babysitting for my great niece. Its been kind of neat having a baby around plus the fact she can go home too. Lizzy says she is babysitting. She watches careful eye over her and asks all kinds of questions.

Interlake goes for auction in March now. So, we have a bit more time I hope. Not sure of the out come. It really sucks not knowing what the future will bring. We still need prayers.

Our DME forgot to order Lizzy's supplies this month. Grrrr so we will be VERY late getting them. I have some tubing and water traps coming from some great friends to help out. I hate this!!! Its crazy.

Lizzy, Christen and I made home made valentines this week also. Christen made most of them. Its more expensive making them than buying them!! They are cute though.

We are trying to stay Positive and hoping 2009 is good year for us.

Now we have to make sure we have a way to Stanford in March its getting close. I wish spring would get here fast

Sophia Doebbert went home today from the hospital. Many prayers for them and all the sick kids.

We believe in Miracles!!!
www.our-sma-angels.com/elizabeth

Lizzy's letter to President Obama (Spinal Muscular Atrophy)

Elizabeth was with her speech pathologist yesterday Allison and they decide to write a letter together to President Obama. They talked about things Elizabeth thought he needed to do. Now, this is coming from a 5 year old. You got to love them for being so honest and thinking a president can help like this. She is been very aware of who President Obama is and she knows his office helped us at one time when an airlines would not let us fly because she had a food pump. When he won the election she was so excited.

DR. President Obama:

I need you to get me some of the stuff I need and help others.

I need you to help my Papa or get him a new job so he is not upset. (His work is being bought by a company from Spain at auction . This company wants to lower wages to $10.00 an hour, bust their union and cut health benefits drastically. If this happens we will lose our house. The company is in bankruptcy court right now.)

I need your help us to get a lift for our van so I can take my power chair every where.

We need you to help all the kids like me get the medications they need and make them stronger. ( Research, Clinical studies and Adult stem cell research)
She said he needs to make more people know about SMA so many kids they don't get sick. (So I guess that means more awareness about SMA)

I need you to help all the handicapped people get what they need.

I need you to the teach all doctors about SMA so they know how to take care of people with SMA.
I want you to help the hungry kids get food.

Thank you,

Elizabeth Hallam
www.our-sma-angels.com/elizabeth

Wow... some pretty deep stuff for a 5 year old. (My explanations in parentheses)

New beginnings for us ? ( Spinal Muscular Atrophy)

Thank Goodness Obama will be president here soon. I am hoping he will get things figured out to this Economy crisis we are in. I know in one day it will not get fixed but maybe things will start improving just slightly.

Every day my husband is going to work we are thankful but it is a constant fear every day he will come home and say they closed or new company took over and that he lost everything he worked over 30 years to get. They want the workers to go down to 10.00 an hour pay, cut the insurance, cut the seniority take out the dental and the list goes on.... Its 4 inch thick with of demands the of new company if they buy his place of work in Bankruptcy court. The plant was closed for two weeks over Christmas and New Years. That hit....whooooo bad. Paid bills a few weeks ago and I cringed at the amount left over... I feel like a broken record these days.
He said we will lose the house if he stays there and has to take the cuts.
I may have carpal tunnel so I think my doc is right. It seems to be getting worse. So, there goes me getting a job. I have not posted too much about us lately. I just have tears dripping down my face when I think about all this and can not do nothing about it . I don't want to bring others down reading how things are happening here.
I try to remain positive around Lizzy and she keeps me busy. She is such a great kid. So full of Life.
Looking at all options right now and praying so hard every night to God help us figure out he path we ar supposed to take.
So, if I don't update much I am sorry.

Many prayers for Lizzy's friends Sophia Doebbert and Aubrey Poole they are both sick right now.
I BELIEVE IN MIRACLES!!!
Maybe the future will be a great!!!
www.our-sma-angels.com/elizabeth

Bizzard coming our way (Spinal Muscular Atrophy)

The weather man says we have a blizzard coming our way. Elizabeth was excited to hear that one. She said " I can go outside in my sled and go sledding in lots of snow" The precious mind if a 5 year old. I would love to think like that. I get a bit of anxiety worrying about if the power will go out etc.

We got our appointment for March for our trip to see DR. Wang. Do not know if we will get help through Mercy Medical airlift or not. They told us last year they would help us with flights in March. I have a message into them so I hope we hear soon. DR.Wang is working on his article and his findings so I hope he finally will reveal how the heating procedure is done on the trial med Lizzy is on.

Lizzy is good these days. She is very opinionated and her vocabulary is amazing. She says "Actually.... all the time or "Heeeeeello" if she wants something. She tells on Christen for everything .

She loves HGTV "House Hunters" and "sell that house" Two of her favorite show she says besides Sid the Science kid . She says she loves watching what house people will buy and how they fix houses. I try to keep her busy and not watching TV. At night I have them on before she goes to bed so I guess that is how she learned to like them.

Today she was doing her computer with only the easy cat mouse and no other switch. She is so smart to have figured that out. She did numbers, and colors learning programs on the computer today alone. I mean she does stuff ALONE but I did not have to help her at all!!

Sophia Doeebert is very sick right now. She is Lizzy friend She had a negative culture for RSV but her symptoms sound like she has it. So many sick kids right now. Many Prayers for them.

Well, so far Papa is still working. He went back to work last Monday. They do not know what is going on. The workers are so much living in fear. At anytime they could come in and shut the doors, rehire the next day and cut wages significantly, cut the insurance etc . and the future is UNKNOWN. We know that the current company filed Bankruptcy last Monday and motions were granted last Wed.

No one has mentioned the proposals tne union denied. The mayor is all happy saying they are not closing and have been bought and the workers will not lose their jobs. Well they will be bought at auction and that has not happened yet.

So, please keep your prayers with us. We so need them right now.

www.our-sma-angels.com/elizabeth

Justice will prevail (Spinal Muscular Atrophy)

Our Illinois Governor Rod Blagojevich is being impeached by the Illinois House today!! Like....finally!! Maybe it will save our prison from closing. Maybe Lizzy will be able to the Medical Waiver program to help out with what we need for her!! The Governor had used the funds for that program we found out last year to fix the roads in Chicago.

On the update about my husband's job. Well, right now we know the company filed Bankruptcy and the company from Spain is buying it or bought it . So far they are working this week. They are running 1st shift and very few on second. They had laid some workers off a week ago. Also heard they MIGHT be on over time next week. We will take what we can get right now. We are just praying everything works out. I mean with the economy the way it is how can they ask the employees to take a huge pay cut and then pay more insurance? That is crazy!! Lizzy and I have been praying every night that things will turn out okay.

I saw the doc yesterday. I lost a bit of weight and I may have Carpal tunnel syndrome. I don't believe it. We are just watching it right now. You know when you work hard when you are young it catches up to you!! You think you are invincible. We talked about My husband's work situation and talked about Lizzy's RSV shot denial and how hard her had tried to get her that shot. He talked to like 10 people at the state to get it for her and they all said "no. They were not going to approve it at all no matter what."
I told him I needed to go back to work and he said we will wait to see what happens.

There was a baby that passed yesterday with SMA Type 1. Actually he died from Pneumonia. The parents chose to turn his machines off.
Fly high Little guy fly free of SMA. Please Jesus take him in your arms. All I can do is pray for them. If I offend you in what I am saying I am sorry. I see families that just give up the fight to save their children with Type 1 and turn the machines off because they think their child is suffering. The truth is sometimes the child is just sick and needs help to get well but the parents choose to just let them go.
That is their choice for their child as much as it hurts me to hear about it. Its is not any easy life for any of us in the SMA world but it is a good life after we figure out what works for our kids. Lizzy has the best possible life we can give her and she is happy. Not so many years ago they did not have interventions to help these kids. They were given a death sentence after they were diagnosed like Lizzy and so many others were. The NIV Protocol has saved so many. Then the AA diet and so many things you can do to help these kids. Now there are also drug studies that can help these kids produce more SMN protein.
We have to fly to Stanford in March. We need to get busy figuring out how we are going to get there. We have been so consumed with worry over my husband possibly losing his job we have not even thought much about it. Hopefully, Gas prices will stay lower so it will not cost so much to fly like it did in October.

Not so good news for us (Spinal Muscular Atrophy)

Lizzy is doing better. She is back in her "Purple power chair" running all over the house tormenting her mother.

Please have the Sartoris Family in your thoughts, prayers and hearts today and tomorrow. Their sweet angel Sam earned his wings Jan.1st He was a very special little guy.


Well, The company Interlake here in Pontiac that my husband works for filed bankruptcy today. For some reason the union and workers have been told it will not be until Wednesday they would file.
Please please please add the workers of Interlake,their families and us all in your prayers. I ask again. The power of prayer works.
So, many unanswered questions . Its hurts to think we might have to leave my kids and my parents. My daughter Dawn is expecting a baby and due in March I want to be here to help her. I don't know if we will be able to stay here. Will we be have to or able to sell our house if we have to move? Will my husband be able to find a job at 54 if he has too? Will he be able to stay at his work. Will I be able to find work if I have to? The worrying is consuming my waking thoughts. From what I understand the company from Spain called Mecalux is supposedly buying the Interlake in Bankruptcy court. How that affects the workers in still unknown. The gag order is now off the workers and we know now that Interlake tried to get the workers to take pay cuts, senority, pay more insurance costs, cut dental, take away vacation and all sorts of things, Four inch thick worth of demands so Metcalux would buy them. They threaten Bankruptcy and closing the doors if the workers and union would not agree to the terms. That was last week. The workers were on gag order until today.

What ever it takes we will do it to keep us together. Elizabeth needs us to be strong for her.

Okay, President Elect Obama you have your work cut out for you in 2009. Lets see how you will get things done. You have a great staff with some of the best minds. There has to be solutions to this economy mess.

We all have a lot of challenges we are facing this New Year already.

The Prison situation is on hold for now.

We believe in Miracles. They do happen. I live with one and her name is Elizabeth.

www.our-sma-angels.com/elizabeth

Miracles and needed prayers (Spinal Muscular Atrophy Type 1)

Lizzy has an ear infection but is doing well considering. She is on an antibiotic right now. I have added Pedilite to her food mixture. She says its still hurts "Just a little bit"

Papa still is on gag order till Monday and can not discuss his job situation but it sounds like they will be closing Interlake here. But....... Miracles do happen.

Speaking of Miracles I wanted to ask you send special prayers for Sartoris family in Pontiac,IL . Vince and Mary Ann's son Sam age 15 became an angel on Jan 1. 2009. Sammy had Down Syndrome and had some heart surgeries my daughter Dawn had told me. Dawn loved him so very much.

Sam was a special little guy that had a great life on this earth. He was treated with so much love and I hear he gave so much love also. All that met him just loved him. Dawn and Caitlyn had went many outings and vacations with him , his sister and Mom. He was a very special little guy . I heard he always had a smile on his face. Dawn was devastated when she heard the news of his passing. I told her to celebrate his life and just remember the times with him as good memories. Mary Ann his mom is one of those Moms that you learn from. She was one of the best moms I have ever seen. Sam got to do a lot in his short time here and Mary Ann had seen to that.

Here is more about Sam:


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Pontiac, Ill. -
The funeral Mass for Samuel S. Sartoris, 15, of Pontiac, will be at 11 a.m. Tuesday at St. Mary’s Catholic Church, Pontiac.
Monsignor Thomas Mack, Father Michael Bies and Deacons Jim Wallace and George Wagner will officiate.
Burial will be in St. Mary’s Catholic Cemetery, Pontiac.
Friends may call from 4 to 8 p.m. Monday with the Rosary to be recited at 3:45 p.m. at St. Mary’s Catholic Church, Pontiac.
Duffy Funeral Home, Pontiac, has charge of arrangements.
He died at 9:11 p.m. Thursday, Jan. 1, 2009, at OSF Saint James-John W. Albrecht Medical Center, Pontiac.
He was born Oct. 11, 1993, at Pontiac, the son of Vincent M. and MaryAnn (Gernentz) Sartoris.
Surviving are his parents, of Pontiac; two brothers, Vinnie Sartoris, Chicago, and Donald Sartoris, Los Angeles, Calif.; one sister, Rhiannon (Jason) Long, Pontiac; aunts and uncles, Tony (Jacquie) Sartoris, Christine Sartoris, Nick (Caroline) Sartoris, Donna Sartoris, Sue Harrington, Phil (Carol) Sartoris, Kathleen (Roger) Reum, Mike (Sandy) Gernentz, Barb Thompson, Jim (Cheryl) Gernentz and Diane (Jim) Johns; his nephew and best friend, Marcus Long; his niece, Maria Long; his maternal grandmother, Vera Gernentz, Pontiac; and his paternal grandparents, Dave and Ann Sartoris, Pontiac.
He was preceded in death by his maternal grandfather, Donald Gernentz.
Sam was a freshman at Pontiac Township High School.
He was a member of St. Mary’s Catholic Church, Pontiac.
Sam was an avid golfer and helped keep score for the Nik Macker Association Basketball. He was an altar server for St. Mary’s Catholic Church and was Disney’s #1 fan.
Sam was a special gift we were given for such a short time on earth. He loved everyone he met and truly enjoyed life to its fullest.
Online condolences may be made at duffyfuneralhome.com.
The family wishes all contributions to be made to the Children’s Hospital of Illinois at OSF Saint Francis Medical Center, Peoria, St. Vincent DePaul Food Pantry or to St. Mary’s Catholic Church.


Please send Prayers our way also For Lizzy and to help guide us through the months coming to make the right descisons on our future. We do not want to leave this area but may have to.