New Year ....New hope? (Spinal Muscular Atrophy Type 1)

Its been a rough year for the economy and us. Gas prices went up to over $4.00 a gallon. Many insurance denials. Lizzy got to meet Senator Rutherford. We spent time in CA with great friends and went site seeing for the first time ever in the over 4 years we have been flying out there. We had the first black president elected and will I hope help change the mess the economy is in. So, much to remember in 2008. We have gained good friendships and our lives seem more enriched with warm feelings of those that are close to us. I have a new great niece this year and a new grand baby that will be born in a few months. We have met so many great people this year.
Then Interlake saying they are closing their doors. Paul has worked their for 30 years this past October. The stock market crashed, The lowest interest rates on buying houses in many years, the cost of living increased, Major layoffs nationwide, we had a bad flood here and so did many states and our IL Governor was busted for illegal activities. Its been one of them years to remember. You know when your grandparents tell you stories and they say back in 19....... Well for us it will be back in 2008. Wow. Our world as we know it will be drastically changed. I spent today crying my eyes out worring about our future. Will we have to move? Will we have to see the home we raised our kids in sell to some strangers? We will have to move in with relatives? What is 2009 going to bring us????

It has been a great year for Lizzy. She has grown so much and is doing the best ever. She had a two big trips to meet friends and it was a great year for her. She has gained more movement. She is talking better than ever. In this new year we have lots of decisions to make. The question are we staying here or moving up north. Is Paul going to get a new job ? Are we going to be able to sell the house and come out ahead enough out of it to move. How ae we going to get to CA to get Lizzy's Med to keep her strong? Am I going to get a job and leave Lizzy with her Mom so I can work? ahhhhhhhhhh decisions decisions decisions.

Its always sad to see a year go but its exciting to see a new years start.

I believe in positive thinking and we have the power to change our own destiny. As, I have said before we will be okay. We are survivors. There is a little girl that lives with us that gives us strength and show hows that miracles do happen.

Lizzy had water therapy today and for the first time ever did not complain she was swimming on her stomach.

Hope you have a wonderful Happy Healthy New Year!!!!!!!

What will the future hold for us? (Spinal Muscular Atrophy)

Well, Papa went back to work yesterday only to get a notice that they will be closing his work in 60 days. The company is not telling the whole truth to the media. There is a gag order until Monday on the workers. Then, the truth will come out. There is more to this than anyone at Interlake is saying.


By John Faddoul
Pontiac Daily Leader
Tue Dec 30, 2008, 01:42 PM CST

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Pontiac, Ill. -
Interlake’s Pontiac plant “may be” permanently closed about the end of February, according to a required notice given to employees this week, although efforts today by The Daily Leader to reach corporate spokesmen on the future of the plant were unsuccessful.
The notice was required under federal and Illinois laws about possible plant closings, but a source who spoke with The Leader this morning said that employees were told there would probably be a large layoff, to about 150 workers, representing one shift. The notice given to employs refers to 262 employees. It also says that the plant “may be” closed, not that it will be closed.
Pontiac Plant Manager Ron Bakos referred questions to United Fixtures Interlake offices in Naperville, but The Leader this morning was unsuccessful in reaching spokesmen in the Human Resources office there.
The Illinois Worker Adjustment and Retraining Notification (WARN) Act requires employers to provide 60 days advance notice of pending plant closures or mass layoffs. The notice about the Pontiac plant was provided to employees pursuant to that and the federal WARN Act.
Interlake Material Handling Inc. “may be closing” its facility at 701 Interlake Drive in Pontiac because of “unforeseen business circumstances, namely a significant and unexpected drop-off in business over the last several months, due to the faltering economy,” read the notice, dated Dec. 29 and signed by Interlake President and CEO Daniel P. Wilson. A copy of the notice was obtained by The Daily Leader.
The plant closing, “if necessary will result in the separation of all of the approximately 262 employees,” says the notice.
Following is the text of the notice to employees obtained by The Leader:
“It is with regret we must advise you that, due to unforeseen business circumstances, namely a significant and unexpected drop-off in business over the last several months due to the faltering economy, Interlake Material Handling, Inc. (the "Company") may be closing its facility and discontinuing its operations at 701 Interlake Drive, Pontiac, Illinois, 61764.
“The Company has been seeking, but has been unable to secure, capital which would allow us to continue our operations. We have also been in discussions with a potential purchaser. Unless we are able to obtain sufficient capital or to finalize a sale, the Company likely will implement a plant closing that will result in the termination of all operations at the facility. Although it is difficult to predict what will occur in light of the current situation, the Company anticipates that the plant closing, if necessary, will result in the separation of all of the approximately 262 employees. The expected employment separations, if necessary, are likely to occur during the fourteen-day period commencing on February 15, 2009 or soon thereafter. The facility would be completely closed shortly thereafter. The plant closing, if necessary, is expected to be permanent. As a result, any bumping rights you may have would not apply.
“This notice is being given to you pursuant to the Federal Worker Adjustment and Retraining Notification Act and the Illinois Worker Adjustment and Retraining Notification Act, which require employers to give official notice to affected employees of a pending mass layoff or plant closing. We realize that this decision will cause hardship to our employees, and we can assure you that we hope to accomplish the closing of the facility, if necessary, with the least possible disruption to the lives of our employees and their families.
“You will receive further information in the coming weeks regarding the closing of the facility and your opportunity to continue healthcare coverage (if you are currently enrolled in Company healthcare plans). In the meantime, the Company official you should contact for further information on this matter is” and lists Plant Manager Bakos. Interlake is the largest manufacturer of steel storage racks in the Americas, the company’s Web site says, and is division of United Fixtures/Interlake, Interlake Material Handling is headquartered in Naperville and employs more than 650.

IAC, Ill. - About 260 employees of a central Illinois storage-rack factory are at risk of losing their jobs, in what would be the latest blow to the community of Pontiac.

Layoffs at Interlake Material Handling could start on Feb. 15 if the plant can't secure fresh capital or find a buyer and the company could close soon after that, according to a letter obtained by The (Bloomington) Pantagraph.

Interlake Material Handling CEO Daniel Wilson wrote the letter, posted Tuesday on the newspaper's Web site, to the company's board chairman, Bill Fairfield.

Wilson blamed "unforeseen business circumstances" for the company's woes, which he said included a drop in business over the last several months amid the global credit crunch.



Interlake is Pontiac's sixth largest employer, and Mayor Scott McCoy said Tuesday that he holds out some hope the plant will find a way to stay open.

"The information I've received so far indicates to me that there are possible solutions to this situation," he said. "I'm committed to do what I can to help retain all local businesses and jobs."

Employees were informed about the possibility of layoffs Monday, said Ralph Timan, president of the United Auto Workers Local 2488, which represents more than 220 plant workers.

"Obviously, it's devastating for our members," he said.

It wouldn't be the first Interlake layoffs.

The company laid off nearly 70 workers in April, then let go 45 hourly workers and four salaried employees in August.

Word of the latest layoffs also comes as embattled Gov. Rod Blagojevich's plan to close Pontiac's second largest employer still looms. If the Pontiac Correctional Center shuts down, 570 prison workers could lose their jobs.

Pontiac officials have accused Blagojevich, arrested earlier this month on charges he put President-elect Barack Obama's Senate seat up for sale, of using the plan to close the prison as a big stick to batter political opponents.

But administration officials have said the closure is a cost-cutting measure based on economics, not politics.

Christmas thoughts and Lizzy(Spinal Muscular Atrophy)

Hope you had a wonderful Christmas. We had two days filled with great family time, good food and memories that will be implanted in our hearts.

It is hard to face when your parents are getting up there in age. Man, I think of my parents when picturing them in my head as being 50 the age I am. It that not weird? I don't know but seeing my mother this year hit me hard. She is not doing well.
We would not let Mom do a anything Christmas Eve. It is just tradition that we spend that day with Mom. She used to cook like crazy . I made the Italian beef (we had a 3 hour power outage here and I was freaking out but it turned okay after the power was back on and I boiled the heck out of it and it was very tender and good ). The girls all brought something . It all worked . Christen and I cleaned up. It was nice.

We actually made it to brunch at Paul's sisters on Christmas day. Got Lizzy up,bath ,ready,treatments done and out the door by 9:30am It was great day.
Paul's step sister Ingrid had gotten engaged on Christmas Eve. Missed his family too. Many were not there. They were out of the country or they didn't want to attend.
Sharon's house is just beautiful.


I missed my brothers and my sisters as they all live in other towns, states and other countries. That hurts they are so far during the holidays. I would love to before I leave this world to have one more Christmas with them all here.

Lizzy has transformed into a beautiful, intelligent, opinionated little girl from the toddler she was a year ago. She is so much stronger and the look in her eyes is so strong ,determined and she just knows just everything. She knows what neb she needs, if she has a plug, reminds you to flush her with water but not too much.... if she has had her meds. She is just too funny. She never stops amazing me. She just makes us all want to do what ever we can do to help her. She is my heart my life.
Just seeing the joy in her eyes and the happiness in her bright face makes my life so much more full filling. She got everything she wanted and even more. She had a great Christmas.

We have one more Christmas gathering on Sunday with Dad.

I have packages to mail out this coming week and cards to mail I didn't get a chance to do. Christmas snuck up on us and the bad weather made it even harder to get caught up on the things I needed to do. Then, worrying about spending money made it even harder to get those things mailed out. I just hate not knowing and not being able to do the tings I love. I love sending little gifts and baking. I did bake but by the time I was able to send them out due to the weather they would of been not able to eat by the time they arrived hundreds of miles away. So I will bake again this week-end.

Paul has not worked since a week ago WED. He finds out the 29th what will happen to his job. I am also worried about getting to CA in March for Lizzy. Some way we will do it!!

Hope you all have a Happy Healthy New Year and Many prayers for all the sick kids.


www.our-sma-angels.com/elizabeth

Winter Storm / Update

Well, its less than a week before Christmas and we have had lots of snow, freezing rain and power lines down. We are so far okay. We have back up in case of situations like this. We have Marine battery, Sine wave inverter and the trusty gas generator.
My daughter Dana has been with out power since wee hours this morning and it may not be on till SUNDAY!! Jessica (my daughter) lives across town and her whole block is with out power. I guess the tranformer actually fell from the ice storm last night.

This week we got the second denial for Lizzy's RSV shot and the water heater went out. We will appeal again I hope. One step foward and two steps back it seems all the time. DR. Hough (Lizzy's doc was furious with the state/insurance . He said "They just do not not get it. He is so afraid for Lizzy right now his nurse was telling me. He asked the state doc on the phone "do you not know what SMA is?" Do you have other kids with ths disease?" He is not a happy guy right now. He does everything he can for Lizzy. She has two Letters of Medical Need and they still refuse her. She still weighs less than 26 pounds. It isnt like she weighs to much. If Lizzy catches RSV she will be hospitalized for weeks and it could kill a child with SMA.

Lizzy started having belly issues last night and is now back on bland diet( donor) Breast milk, Tolerex and pedilte. She is doing so much better today. We had not changed a thing and she started the blood up her g-tube again. First time in about a year. What is weird another family had called us about that last week and now Lizzy is doing it again. At least I know what to do. Lizzy is back on prevacid also. Nothing new in her diet at all. Really strange

Paul got the water heater fixed so that is good. He just had to get parts and saved us almost $500.00 we dont have. Thank goodness.
Paul is on shut down and has a meeting Monday the 29th on what is going to happen to his job for sure. Its so scary out there right now. What will we do? He is doing somethings around the house today so he can FINISH the Bathroom upstairs. Whhhhhhhoooooo hooooooo . He is very worried we are going to have to sell the house and move. He will not be paid for the shut down. Its sucks to have this happen at Christmas. We usually send some of our good friends presents at Christmas but.... not this year. I think that hurts the worst not being able to to do that. The good thing is I have family and friends that mean so much to us. In that fact my heart is rich because I have a great family and great friends.

Many special prayers to all the sick kids out there.
May you all have a healthy, happy holiday season.

Ho Ho Ho (Spinal Muscular Atrophy Type 1)

Pretty interesting news out there about our IL Gov isn't there. The thing is I don't think he thinks he did anything wrong. My impression is that he believes he was/is "above the law". Sad but true.

Woke up today and there was a bit of drama around here. My husband and Elizabeth's Dad had started MONTHS ago redoing the upstairs bathroom. Well, there was a leak and the toilet had to come up. Well, Paul broke the porcelain throne pulling it out to redo the drain. Long story short he did not replace it because he said we didn't have the money. Okay, well today Christen dropped something down the hole with the new pipes in it and they all went about 30 miles to get plumbing things to pull it back up.
So, for many months in the morning its been like I living nightmare trying to run Lizzy down stairs to pee and me holding her doing the "Pee Pee Dance" myself while Papa is in there doing his daily duty. Its been nuts. I mean nuts. So, someone called about a week ago(Family member) and asked what I wanted for Christmas. I replied after one of the morning rituals (The pee pee dancing holding Lizzy and waiting for Papa to get his morning duty done) I want a upstairs toilet for Christmas being sarcastic of coarse. Well, Guess what ? At this very moment in the van hid from me is a freaken upstairs toilet my wonderful loving husband bought for me for Christmas. ugh...... Okay.... I know we need this and I know we are coming up on the shut down of his job but come on.... a freaken Toilet for Christmas????????? I would of rather him bought it put it in and gave me nothing but to say its my Christmas Present. I only know about this because Lizzy told me and it was a secret. Am I wrong to feel this way? I asked my daughter Christen and she is not a good liar. Yep, I got a toliet for Christmas. You know you have to laugh but then you feel like you have been betrayed or something. What the heck......I guess I will just as they say "go with the flow!!!!!"

Lizzy is doing great. Sitting behind me coloring in her color book with a marker.
I hope I gave you a laugh as we all need it right now.
Hope the holidays are good to you.

Many Prayers to our friend Shira. She has RSV. Poor sweetie!!!!
Prayer to Kaitlyn and all the sick kids right now.

Hey say a few prayers for me that they finish my kitchen after the upstairs bathroom is finished in case we have to move and just because it needs to be finished. Now that would be a great Christmas present!!

Happy holidays!!

Spinal Muscular Atrophy

Our IL Gov got arrested!! Yeeeeeeeees!! It is about time!! Too much corruption with that guy. Maybe since he was arrested our prison will not close and the special needs funds will be used for special needs instead of Chicago toll roads. Ya think?
Lizzy is doing great.
Its freezing rain out side tonight. We have more snow coming!!
Lizzy has the MDA lock up this week, we are hoping to go the our state senator's press conference tomorrow depending on the weather , speech, swim therapy the next two days so we will be busy.
Paul is still working this week and 3 days the week after and the future is yet to be discussed on closing for sure. They are being very quiet about things. I pray they gets lots of orders in and stay open.

Happy Holidays and God bless.

The Rough Economy hits us in the face (Spinal Muscular Atrophy)

Its been awhile sorry. Lizzy is doing well!
Paul has been home this week on vacation and we had appointments all week.

Well, we found out that my husband plant is closing down. He was told he needed to go down next week and sign up for unemployment. That waiting week just tough this time of year with no check for a week. Interlake Inc. is supposed to shut their doors for good here. Scary to think about how rough the economy is and then you get hit with it in the face. Wow... There is no jobs around here. If worse comes to worse I will just go back to work. I can do about anything and have been trained in several jobs and have college behind me. I will not be able to care for Lizzy like I do but you do what you have to. We will survive! We are fighters and survivors in this house!!

Lizzy learned how to use her communication device that was loaned to us.
Sarah Wilds from the PRC company got to meet Lizzy and showed her how to use the device. It was great. Lizzy caught on better than any adult she has taught. It was very exciting!! She used a track ball(Did fantastic) at the appointment and at home she is using the Easy Cat. She talks well yes but this also teaches her sounds and words also very cool!! Sometimes she refuses to repeat herself and she is hard to hear.

Lizzy got to experience her first time ever last week playing in the snow last week with her sled. It was great!! she loved it!!!!! She squealed in excitement. Pepper even pulled her in the snow!

Hope you all have a great holiday and keep a heads up. Things will be getting better in the future! Lizzy helps us keep a positive outlook around here.

Many Prayers to all our sick friends!!

I am a great Aunt for the very first time on my side to a Alexis Desirae Reed 6 lbs 14 oz born DEC 5th (on my 34th wedding anniv.) Congrats to my nephew Christopher and his wife Amanda Reed

www.our-sma-angels.com/elizabeth