Been a Great Start to Summer!

Doesn't Lizzy look awesome? She has grown and filled out so good these last few months!! Thank you to all the breast milk donors!! You have given Lizzy your most wonderful gift!!
She is doing the best ever!!

Lizzy, Christen and I have been out walking almost every night. Thank goodness Lizzy stays up late. We go after dark because of the heat.
Hanging out here has been fun. Every night it seems we have an adventure on our walks. I love the exercise and Lizzy loves running around town. Her favorite place is driving fast down the law and justice center handicapped ramp here. The mosquitoes are terrible. Lizzy had some bites one night with  just OFF on so we started using lemongrass soap  in her bath also and she has not got bitten since.

Its been such a different life with Lizzy being able to stay in her power chair most of the time. Its been great for all of us!!
 Its already past the middle of June. Wow... How fast time flies!!

Last night we went to Monsters University Movie down town. We went with family and had a great time. Caitlyn , Lizzy and I walked home. We have to walk every night you know!

We went to Dawn and Jeff's on Fathers's day. The girls and I took the kids fishing . Lizzy had a blast. She had never been fishing before.

We still have the online fundraiser for Lizzy for a handicapped van. We have got a few hundred over 1000.00 raised. That is so great!!  Thank you all that have contributed. Christen is looking into more funding resources through a van company that sells accessible vans.  So, keep Lizzy in your prayers!! Walking with her is great but it will be hard getting her out with out a handicapped van. Laying on the back seat she plugs when in the van to long. She can elevate herself and maneuver her chair if she feels choky or her uncomfortable. She can not do that laying in the back seat.


We are missing all of our friends this year from the FSMA Conference. There was no possible way for us to attend this year or go any where for that fact! Lizzy so wants to go!! Hopefully, we can go to the FSMA  conference in DC one next year. Things should be looking up by then. Paul has his SSI  Disability hearing in Sept thank you to our US Congressman Adam Kinzinger's staff expediting his hearing! Whoo hoo Finally!! what a weight lifted of my heart!!

We have done pretty well for as hard as we have had it for the last almost 4 years. The last two years have been the worst since Paul's accident and his diabetes issues. It seems keeping positive,prayers and the love of friends have kept us going. There is a little girl that lives here that keeps me inspired also!!

Special prayers for our friends Charlie and Jake  !! They both have surgery for lengthening growth rods on Monday!!

''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

Labor Day - Holiday Weekend (Spinal Muscular Atrophy Type 1)

Have you ever felt like time is flying right by you? I mean it seems I was a kid not that long ago fighting with my other brother over a baseball bat, mini bike, or the horses. I am 51. My grandmother's age when I picture her in my mind. Sitting back looking back thinking..... has my life been one I chose to live or its just one chose for me? My kids are grown and their kids are growing so fast. Reed Michael my 1st grand-son is 18 now and Lizzy will be six in a few weeks. Where does all the time go? As, a kid a year seemed like forever and now in a blink of an eye its gone. My body feels old but my minds wants to learn and absorb so much more.

Will they find a cure for SMA in my life time? Who will take care of Lizzy like I do when I am gone if there is not a cure? Finding a way to keep Elizabeth strong and healthy consumes my inner being. Making sure she survives this awful disease is my life and helping as many people as I can on the way.

We stayed home from the Telethon this year because Christen insisted we needed a break. Lizzy was the MDA Good will Ambassador for three straight years. It was quite an honor but we stayed very busy doing MDA functions a lot until this summer. We thought it was time for another child to have the spot light in our area. (The MDA here wanted NEW faces this year) They really needed a family that fought so hard to save their child's life. They needed a hero similar Lizzy from this area. The MDA Good Will Ambassador here this year is 2 year old girl from Peoria that was diagnosed at age 1 with SMA. I know 2 year olds are sweet and cute but it just did not feel right to me. Not, that I thought Lizzy should of been the Good Will Ambassador again but I guess I am stereotyping the MDA Good Will Ambassadors. Like the little girl that is National ....Like Luke(last years National ) and Tyler Ingles(From the area tht earned his wings last year) . Exceptional kids. They were/are fighters and just special individuals with so much strength. That is the way I feel about MDA Good Will Ambassadors. Strong minded kids on a mission to help others and to help raise money with their great personalities and intelligence. Their families went above and beyond. You need fighters and a family that goes beyond the dots for their child. Am I wrong? Should I feel bad for feeling this way?

We tried so hard to reach out to this family from Peoria that their daughter is this years Good Will Ambassador when the grandma called me over a year ago. The parents were just going to let nature take over with NO interventions. Grandma had contacted me several times just so upset because the Mom would not do any kind of interventions and the Dad would not do anything with out the Mom's approval. We tried so hard to help them with info NIV protocol from SMA, and of sorts of info Christen and Elizabeth's Dad even went and talked to the little girls Dad and Grandmother over a year ago. She has SMA type 2 no doubt. You can only do so much to help someone. They have to want to be helped. She is a happy little girl but......
It is just strange that this family wanted nothing to with the MDA not so long ago and all of a sudden their daughter is a the Good Will Ambassador.
It bothers me. Its been eating at me all day. I should not worry so much but this little girl and her family represent the MDA for central IL. Their story was not one that stays with your heart. I need to blow it off and forget about it not only bothered but it bothered my whole family.

Lizzy was watching the Telethon today and she is upset because she wanted to go. I made a donation " In honor of Elizabeth Hallam" this morning and on the air they said "in Memory!! " I was so mad. Its local so only a few local big cities see it but how many people think she passed a way from that comment? OH..... that just upsets me.

The MDA wrote Lizzy totally out of the script since we were not gong to be there and have not even acknowledge her at all with all the fundraising and appearances we have done this year and past years. Its like we did not exist anymore in their eyes. Bob(TV anchor) mentioned her just awhile ago and that warmed my heart. He is such a great guy.
Paul and I were going to take Lizzy ourselves today to the telethon we discussed it last night . Christen refused to go I can not lift the power chair with him.
The MDA had called a week or so ago and said they could get us a motel room some where else but with all Lizzy's machines that would not make any sense. I do not know why we could not stay at the motel where the telethon was at. We just could not afford to pay full price for a motel rooms at where the telethon was at. Paul is still not working as much as we would of loved to been apart of it.

The MDA is all about the kids and adults with neuromuscular diseases finding treatments, cures ,equipment and #1 RESEARCH . Its the strongest organization I know and I hope it stays that way.

I am impressed with all the research out there but lets get busy and see some actual results of treatment that is NOT a danger to the kids. 2010 seems like a great year for some Cures or treatments to help People with neuromuscular diseases have a better quality of life.




Interesting article that was sent to me it was published in 2008.

http://www.naturalnews.com/022831_breast_milk_stem_cells_stem_cell.html


Breast Milk Contains Stem Cells
The Perth scientist who made the world-first discovery that human breast milk contains stem cells is confident that within five years scientists will be harvesting them to research treatment for

conditions as far-reaching as spinal injuries, diabetes and Parkinson’s disease.

But what Dr Mark Cregan is excited about right now is the promise that his discovery could be the start of many more exciting

revelations about the potency of breast milk.

He believes that it not only meets all the nutritional needs of a growing infant but contains key markers that guide his or her development into adulthood.

“We already know how breast milk provides for the baby’s nutritional needs, but we are only just beginning to understand that it probably performs many other functions,” says Dr Cregan, a molecular biologist at The University of Western Australia.

He says that, in essence, a new mother’s mammary glands take over from the placenta to provide the development guidance to ensure a baby’s genetic destiny is fulfilled.

“It is setting the baby up for the perfect development,” he says. “We already know that babies who are breast fed have an IQ advantage and that there’s a raft of other health benefits. Researchers also believe

that the protective effects of being breast fed continue well into adult life.

“The point is that many mothers see milks as identical – formula milk and breast milk look the same so they must be the same. But we know now that they are quite different and a lot of the effects of breast milk versus formula don’t become apparent for decades. Formula companies have focussed on matching breast milk’s nutritional qualities but formula can never provide the developmental guidance.”

It was Dr Cregan’s interest in infant health that led him to investigate the complex cellular components of human milk. “I was looking at this vast complexity of cells and I thought, ‘No one knows anything about

them’.”

His hunch was that if breast milk contains all these cells, surely it has their precursors, too?

His team cultured cells from human breast milk and found a population that tested positive for the stem cell marker, nestin.

Further analysis showed that a side population of the stem cells were of multiple lineages with the potential to differentiate into multiple cell types. This means the cells could potentially be “reprogrammed” to form many types of human tissue.

He presented his research at the end of January to 200 of the world’s leading experts in the field at the International Conference of the Society for Research on Human Milk and Lactation in Perth.

“We have shown these cells have all the physical characteristics of stem cells. What we will do next is to see if they behave like stem cells,” he says.

If so, they promise to provide researchers with an entirely ethical means of harvesting stem cells for research without the debate that has dogged the harvesting of cells from embryos.

Further research on immune cells, which have also been found in breast milk and have already been shown to survive the baby’s digestive process, could provide a pathway to developing targets to beat certain viruses or bacteria.
[ 10Feb2008, ScienceNetwork WA,


Many prayers for all that need them.

"We believe in miracles because we live with one"

www.our-sma-angels.com/elizabeth

Thank you (Spinal Muscular Atrophy)

Sorry, I have been MIA online this past week. Christen has been sick this week(She is on antibiotic) and I am keeping her clear from Lizzy and me. She is better but still has a hacking cough. Ewwwww all those GERMS. I am not wanting to get sick or get Lizzy sick while on our road trip this coming week. So, I have been chasing my tail all week not getting caught up or at the a point I can pack yet. Its been frustrating to say the least.

The Bake sale. CAR wash was really great!! THANK YOU SO MUCH!!! They raised around $500.00!! That is such a big help. OMG! Thank you Friends , family and people in our community of Pontiac for your support and help!! Today my daughter Dana has a car show at the park and runs a concession stand and selling some of the Boutique hair bows I made also. She has already sold 5 this morning so that is GREAT. AT $4.00 A PIECE that will help too. We have enough money for motels room and gas now so we should be good!! Thank you to the many great friends we have!!!

Lizzy is doing pretty good even though the humidity is so thick you can cut it with a knife.
She has grown so much this year that some of her summer clothes that were bought in May are too small!

Lizzy will not be the MDA Good Will Ambassador for central IL this year so that is one less thing we have to worry about. We can SLOW down on feeling obligated to go to things we have no time for .. Don't get me wrong we will be at the telethon and some other MDA things. Lizzy has been the ambassador for three years running and that was quite an honor but we felt obligated to do and go to EVERY function that involved the MDA. If Lizzy was not sick or we were not in CA we rearranged our schedule to make sure we made an appearance. This next year if we have something else to do then we will pass and not change or plans. We will still be at the telethon with Lizzy this year. Other kids also need that honor and the chance to help the MDA . It really was time for us to take a break ...... ahhhhhhh. . As, you all know it takes time for us to go any where.

Hope you are having great summer!!! Keep us in your prayers we leave WED!! Many Prayers to my friend Mary and her family. Many prayers for MJ too!!

Will leave Thursday to CA so with every thing I have to do I probably will not be around much this week either.

So, if I owe you something by mail I will send it after Christen is totally WELL. I am not sending that germ any where!!

We believe in miracles because we live with one!!

www.our-sma-angels.com/elizabeth

Articles on Lizzy (Spinal Muscular Atrophy)

Rules Keep Pontiac Girl Grounded

By Sheila Shelton
Pontiac Daily Leader
Wed Jul 08, 2009, 11:52 AM CDT
http://www.pontiacdailyleader.com/news/x488830394/Rules-keep-Pontiac-girl-grounded

http://www.pontiacdailyleader.com/news/x488830355/Event-garners-donation-to-promoter-s-favorite-charity


Pontiac, Ill. -
Elizabeth Hallam of Pontiac is a 5-year-old who was born with a type of spinal muscular atrophy (SMA) that has caused her to need to be treated by physicians in California three or four times a year. This plan has worked for the child until this year.
New Federal Aviation Administration (FAA) rules have put a huge stumbling block in her way.
Instead of being able to fly to California for treatment this year, Elizabeth’s family will have to drive her to California for treatment of the SMA type 1 disease known as Werdnig-Hoffman disease.
The FAA now says that travelers with respiratory difficulties cannot fly without new types of labeling on medical equipment.
According to FAA guidelines, “Travelers with respiratory difficulties who use commercial airlines need to be aware of a new labeling requirement for ventilators, respirators, positive airway pressure devices and personal oxygen concentrators.”
The new regulations require special labels on these machines to ensure that they meet FAA requirements for medical equipment. Trying to travel without following the new regulations may result in passengers being denied a seat, or being required to turn off the respiratory equipment during the flight.
Lizzy, as she is called, will be unable to fly to California for her July 21 treatments with physicians because of these new regulations.
“This will necessitate her family driving her to California,” said family friend Billie Semmens. “This means that the family will have to have funds for gas cards and money that could be used to stay in motels along the way and once in California.
“This means they will also need to be able to have a car good enough to get them to California and back. We are hoping they will be able to rent such a vehicle.”
Friends are hoping to raise money to help the family by holding a bake sale and car wash on Saturday from 10 a.m. to 2 p.m. at Pontiac’s Auto Zone. Monetary donations may also be made to a bank account named “Fighting for Lizzy” that has been established at Freestar Bank.
Lizzy is the daughter of Christen Huette and Brandon Hallam of Pontiac. She is the granddaughter of Herb and Jeanna Huette.
Lizzy was just a few months old when diagnosed with the disease. Her parents were told that she probably would not live past her second birthday without extensive respiratory support, and despite aggressive care, survival could not be guaranteed.
According to Jeanna Huette, the family was able to get Lizzy set up in a Stanford University program for SMA type 1 children with Dr. Ching Wang.
Lizzy first saw Wang on June 10, 2004, in California.
“Lizzy still has the need to fly out to see Dr. Wang every four to six months in order to stay on the medication and in the treatment program,” said Huette. “She is doing so well now, I don’t want to see this come to an end because she cannot fly to California.
“The new FFA guidelines are so stringent that manufacturers of this medical equipment have just not yet been able to achieve all this new labeling.”
Huette said she hopes by any appointment Lizzy may have later this year in California that the labeling situation is resolved.
“Lizzy does so well with this program and we have been able to keep her enrolled in it and been able to get there in a relatively easy manner. I just don’t want government regulations to ruin her method of care,” Huette said.

Event garners donation to promoter’s favorite charity




Event Garners donation to Promote favorite Charity

By Erich Murphy
Pontiac Daily Leader
Wed Jul 08, 2009, 11:45 AM CDT



Pontiac, Ill. -
Four car owners can claim to have the loudest vehicles in Pontiac after results for the Absolute Sound & Security Stereo Competition were recently announced.
The event took place last month at the sponsor’s place of business. Calib Baxter, owner of Absolute Sound & Security, put on the event to raise money for the Muscular Dystrophy Association.
The proceeds tallied $500 that Baxter ceremoniously gave MDA Tuesday when he presented the check to his niece, Elizabeth Hallam. Hallam has spinal muscular atrophy. The check will be sent to MDA.
Baxter said in June that this cause has special meaning to him and that his car club goes to Peoria to help with the phone bank during the Labor Day telethon.
“It went great,” Baxter said of the event. “I’d like to especially thank all those who helped and the Pontiac Police Department.”
Paul Tharp won the Class 1 title. The speakers for this classification had to be 8 inches to 23 inches. Ben Roe won class 2, which had speaker of 24 inches to 36 inches. The loudest in Class 3, which had speakers 37 inches or larger, was Kevin Schneider. The Outlaw Class winner was Ken McDorman.
Baxter said Absolute Sound & Security hopes to continue to sponsor such events in the future to raise money for MDA.


www.our-sma-angels.com/elizabeth

Miracle Ride Today (Spinal Muscular Atrophy)

Today we took Lizzy to the Miracle Ride 2009 at Timber Pointe Outdoor Center/ MDA Summer Camp in Hudson, IL. It was a great time for us and Lizzy too. Being a old biker myself(just have NOT been on one since Lizzy's diagnosis) and Paul still actively riding we fit right in. Brandon actually went to the event also which made Lizzy very happy. Big shocker he even attempted to go. He did get kind of freaky a few times take off and left. I just wish....*sigh* any way it was a great time. Lizzy loves all the bikers and is getting to know the MDA people really well. She hears bikes drive by and knows when its a harley.
Next year hopefully Lizzy will get to go to camp. Christen and I will be going with her. This year the MDA Camp here was closed because of the Swine Flu.

We are still trying to figure out our CA upcoming DR Wang appt. I believe we will some how get the funds needed for driving all that way. We are not going with the Goodson's as previously planned. They have made other plans as of today. We have went through trying to fly before and have been escorted off the plane because of a food pump issue that they would not approve at the last minute. We went through NOT getting our luggage when we were taken off the plane and I do not want to even try flying because not knowing where you luggage is at is very devastating. The new DOT guidelines are in effect and we are not putting ourselves through "Trying To fly" knowing we maybe be taking off the plane yet again. A few years ago Obama's office(When he was US Senator) helped us get this taken care of. Now, us knowing the new guidelines and trying to fly is something we do not want to even attempt. This situation is resolved between the airlines and the manufacturers of the respiratory machines. We are leaving the 15th of July some way some how driving Paul has decided tonight just incase any situtions arise along the way. Lizzy's appt is the 21st.

Check out this out !! We know this family . Pretty neat Vince!!
http://www.foxnews.com/video2/video08.html?maven_referralObject=6363746&maven_referralPlaylistId=&sRevUrl=http://www.foxnews.com/foxfriends/

Many prayers to our sick friends and for Jerika who will be getting spinal surgery next week!!

Oh and day 8 and no swine flu here !! Thank goodness!!!!

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

Back from Conference ( Spinal Muscular Atrophy)

Pictures above are of DR. Schroth, Lisa ,DR. Wang and Lizzy at the 2009 FSMA conference in Cincinnati . We left for the FSMA conference on Thursday morning. We left home and it was spring and come back to HOT SUMMER weather on Sunday here.

Lizzy was pretty hyper with so many people in one place. It was great to see our friends , Lizzy's and meet new friends. Lizzy did have some issues while there which were out of the norm for her baseline She plugged on Saturday and was very choky both Saturday and Sunday but she is fine since we are home. She scared the bjeepers out of everyone when she had to get out of her power chair and get a cough because she had just had a taste of pizza sauce and it made her quite choky. A couple coughs and she was fine. I think the motel was very dry and hot but it was a very nice motel. She did great traveling.

We went to DR.Schroth's workshops and me ...... could not keep my mouth shut as usual. I just think I can save them all and I have to get over that. I told one parent who complained about the bipap that if he did not use the bipap he could kill her if he did not put it on her. She is a type 1 and type 1s need the bipap to keep their lungs healthy and help them get stronger. Ooops.... my heart over rode my mouth again. Another parent who was ignoring their daughter who had a plug I kind of told them their child needed a treatment. Some parents just do not "GET IT" even after months after being trained to take care of their child and it makes me so mad I could scream! These kids were so precious and so fragile. They need pulse oxs on (when they are little and can not talk and always when they sleep) and cough machines and suction machines close ALWAYS in my opinion. Lizzy had a pulse on 24/7 until she was almost 4. When she travels and is sleeping she always has a pulse ox on and all her machines very close.

It sounds great about all this stem cells research will . The babies that are going to be in the trials for stem cells have not been born yet.

Got some news. We probably will not be able to fly to CA in July. UGH.... NEW DOT guidelines. We have to go to keep Lizzy on the med we have no choice. So, we have to come up with a fundraiser very quickly to get enough money to drive out there. I hope we can do it. WE will not take Lizzy off the med no matter what. So, keep us in your prayers that we can get this all figured out. Some how this will happen.

Many prayers for the sick kiddos and to us finding the $ to drive to CA for the July 21visit with DR. Wang.

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

Summer is just starting..... (Spinal Muscular Atrophy)

Sorry. Its been a few days since I have updated.

If you have not heard from me and you have emailed me I am really sorry. Something is wrong with my broadband so I have been using dial up so getting to staying online is hard. I get kicked off VERY easily. I hope I have the broad band fixed by tomorrow.

Its been extremely busy around here. Today for instance, I had my grand-kids , my niece and as always my Lizzy. ALL DAY LONG.... Never a dull moment. Babies cooing, Babies crying, Lizzy having a melt down because needs help with her computer, Rachael(Typical 13 year old) arguing with me about her attitude, changing diapers and losing of my sanity(it seems like some days). Oh and changing my shirt because one of the babies spit up on me. I don't get a chance to get much done these days as for myself, but that is okay. I love kids and taking care of them is natural for me. I would of had twelve if I could of. ( yeah right!!! )

We took Elizabeth and Caitlyn on Saturday to a indoor football game at the Coliseum in Bloomington. Extreme was playing. The MDA got us tickets and it was a great time. Elizabeth and Caitlyn thought it was the best time ever. It was last minute decision and with in 45 minutes we were packed and on our way to Bloomington. Paul got Caitlyn and Elizabeth Cotton candy and a huge slushy. Elizabeth just had tastes but the excitement on her face was something I will remember for a long time. Every one thought Elizabeth was so pretty and her power chair was too cool. Her and Caitlyn both felt very special. We also saw Amber (Director of the MDA in our area) and her two daughters. We talked to Amber for a bit. Not sure if Lizzy will be the area Good will Ambassador yet or if they will do a segment on her for the MDA.

The antisapation has started.... We go to the FSMA Conference on Thursday.
Elizabeth is so excited and we are too. Elizabeth says she wants to see her friends and show DR.Schroth how big she is now and how much she can do. She says she would like to see DR.Wang also.

Also more hurdles for us to jump with New Air Travel Rules for Respiratory Equipment are in the June MDA Quest online Learn more about this new regulation that is already in effect in the Quest Online article, and about other issues that are important to the MDA community at:
www.mda.org/advocacy Oh boy, can not wait to figure this one out since we fly out to CA in July for Lizzy DR.Wang's visit. I will start calling tomorrow to figure out what kind of things we have to do now. If we could afford to just drive we would. This is getting crazy just to fly with Elizabeth.


Lizzy has been doing great. She recovered quickly with the last illness. (All that good donor breast milk she gets makes her bounce back fast)

Many prayers to all the sick kids and for all the family and friends going to FSMA conference for a safe trip there and home.

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

MDA appointment, faster Chair, zoo and Stalker Peacock ( Spinal Muscular Atrophy)

Oh, my goodness I actually have a few minutes to update.
It has been a busy last few weeks. We have also had Corbyn and Lexy here this week. I hope I dont forget anything!!

We went to a MDA " Meet and Greet" a week ago Thursday there we met some new people and saw Cindy a favorite lady of ours since we met her last year at the telethon. It was interesting. I talked to Cindy's husband about some power chair issues that have not been resolved in Lizzy chair in almost 3 years. He put some fire under my hiney to get something done with the speeds on Lizzy's power chair just from listening to him. I went home and emailed a few people from Permobil since our vendor here was not able to get the problem taken care of. It worked!! I got a few emails from the company the next day and one from Richard from Chicago. He was going to fix Lizzy's chair the very next day when he got back but we told him we could wait till Thursday. He was out of the country till last Sunday. He is a great guy!! I wish there were more "Richards" out there. He is so full of info and guidance. We need him here!!

We went to MDA appt this past Tuesday in Peoria. They were very excited Lizzy is doing great. Angie the nurse(Lizzy's favorite) said Lizzy was her birthday present. Dave the OT said Lizzy's left arm contracture is so much better. I picked Dave's and the MDA PTs brains on ideas on how to help Lizzy more at home. I do things that I know but I think with her age now I need to know more. They showed me. Dave is going to make a hand splint for Lizzy's hands to sleep in so she gets more range.
We have no Local OT and PT right now. We will be seeing a local PT here soon as she has an opening . We have to pay out of pocket for PT here that since she does not take Lizzy's insurance. As, you know our old PT stop seeing Lizzy before she quit and the director never replaced the OT that quit last summer. So, our hospital there had no Peds OT or PT. Still no gel pads in from National Seating for the arms of Lizzy's chair. We do not another appt for 9 months instead of 6.

Thursday, life as Lizzy knew just got better better. We met with Richard from Permobil at Lizzy's speech appt at the hospital. He took five minutes to fix an issue that has been going on over 2 1/2 years. He speeded up her power chair so, we can actually take walks and she can run and keep up with her friends. Only problem isshe is so fast now I can not even get a picture of her because every time I try she takes off on me!! We can turn it down but to see her with so much independance it hard to do that to her. He also got a hold of National Seating to order a switch for Lizzy's chair so she can turn it off , up , down , faster or slower herself. Cool.

Friday we went to a MAW get together at The Peoria Zoo. Lizzy and Caitlyn loved it.
We had a "Stalker Peacock" that was running wild at the zoo. Every where we went it was right there. Caitlyn got really scared and almost climbed up Christen to get away from it. It was harmless but it was weird that every where we went it as right there. Lizzy was so fast she would stop for a second and take off!! I got very few pictures of her! She was the only kid there with a power chair!! All the kids thought Lizzy was "too cool"! Some of the adults thought she was "too cool" also. It was too funny. Its like they never saw a child her age in a power chair that can work it so well. She was recognized by a few from her MDA telethon segments. Lizzy is recognized in Peoria( a large city) but not in her own home town. I find that odd.
The girls had a great time. Caitlyn spent the night. Christen took her home early the next morning.
Saturday, evening I get a call from Dawn and Caitlyn Grace was running 104 fever while they were at a wedding Jeff was in!! She asks me if Caitlyn had had any issues and I said no not at all. She had a great time ate well . She played and ran like normal. Well, Dawn was on her way to the ER because Caitlyn was shaking from her fever. After, Xrays come to find out she has pneumonia!!! They gave her a antibiotic shot, an oral antibiotic and sent her home after her fever went down some. My gosh my poor Caity. I am just stunned at her being sick.. She was fine.... My gosh. At the wedding she told her Mom she was sleepy , she could feel her lungs filling up with liquid and she could not breathe. A six year old..... Go figure... She is better today and fever an hour ago was 99.

Lizzy played outside today with Papa and her Dad for a bout an hour twice.. Blaze was amazed Lizzy could keep up with him in her chair. Lexy was here today and I played with her most of the day besides cared for Lizzy.

Well, the holiday weekend has one more day left.

Please remember tomorrow those who were dear to your heart that are only here in spirit and in your heart, The many men and women thought fought wars for your freedom and the babies and children that earned their wings at a young age.

Please say some prayers for Caitlyn, Drew and all the kids that are sick.

We believe in miracles because we live with one.

www.our-sma-angels.com/elizabeth

Finally Spring! (Spinal Muscular Atrophy)

Its May and the signs are finally showing up for spring.
The carnival was here last week-end and Lizzy would not stop asking to go. So, Christen and Jessica took her to the Carnival that was a block a way from the house. Christen took GermX and wipes and was very care-ful with her. Lizzy was only there for 45 minutes but she had so much fun and was so excited.

We have been very busy all this week. We have been babysitting Lexy as usual and now Corbyn.

Lizzy has a zoo visit for MAW in Peoria coming up here soon. I hope we can go this year last year it was too hot for her to go.

I got a call from the trial coordinator at Stanford on Friday last week and she said she is leaving to go to medical school. We will miss her!! She told DR.Wang we plan on coming back out there soon. Yeah, soon as the figure what how bad this flu is. Not chancing taking Lizzy on a plane right now. The man needs to get published!! His data is so important and so is the HU study for the SMA research. So, many kids could do so well if he would get that published and let his heating procedure out there!! He was such a great guy to us when we thought there was no hope for Lizzy. He gave us hope. Lizzy was his "Star patient" for a few years. I can not wait for him to see her at the conference. She looks better than ever and is stronger than ever.

Well, my husband still has not found work yet. We have looked and put his resumes all over the country. Thank goodness we have not spent any extra money because the income tax return went to pay for annual insurances. Any one know of a any Maintance mechanis job email me!!!!!
We are getting along.... just barely. I am hoping to get my arm well and then I am going to get a job. I still do not know what is going on with it. We have no insurance now and it looks like Paul and I will not have any in the near future unless he gets a job. My arm has been hurting since around March 10th. I had gotten a steriod shot but... it did not help my arm. Its feels like a piece of ice in bad tooth then just throbs all the time. I have been tring to stretch it every day but I think its better then it gets bad again. UGH....

I just thought I would add this info just for FYI. There are many new Diagnosed babies out there and they are diagnosing very early now because of the Genetic testing available now.
Lizzy is a very strong Type 1 and I believe she does so well because of all the interventions we do to keep her as strong as she is.

Types of SMA


There are several types of SMA, which are distinguished by when symptoms begin to show. Typically, the earlier symptoms manifest, the more severe the disease, and ultimately the greater the mortality rate. Following is a brief overview of the various types or classifications of SMA:

Type I SMA: Also known as Werdnig-Hoffmann Disease or Infantile SMA, Type I SMA is the most severe. Children with Type I tend to be weak and lack motor development, rendering movement difficult. Children afflicted with Type I cannot sit unaided and have trouble breathing, sucking and swallowing. Usually, symptoms begin to show between birth and six months.

Type II SMA: Slightly less severe than Type I, Type II patients may be able to sit unaided or even stand with support, and usually do not suffer from feeding and swallowing difficulties. However, they are at increased risk for complications from respiratory infections. Symptoms tend to show between seven and 18 months old.

Type III SMA: Also known as Kugelberg-Welander Disease, this is the least deadly form of childhood-onset SMA. Although Type III patients are able to stand, weakness is prevalent and patients tend to require the use of a wheelchair. Usually, symptoms begin to show after the age of 18 months, and can even surface in adulthood.

Type IV SMA: Symptoms usually begin in the hands, feet and tongue, and spread to other areas of the body. This is the adult form of the disease. Symptoms tend to begin after age 35.

Adult Onset X-Linked SMA: Also known as Kennedy's Syndrome or Bulbo-Spinal Muscular Atrophy, this type occurs only in men. Facial and tongue muscles are noticeably affected. In addition, these men also often have breast enlargement known as gynecomastia. Like all forms of SMA, the course of the disease is variable, but in general tends to progress slowly.

Prayers for all the sick kids , Newly diagnosed families and all the people out of work.

we believe in miracles because we live with one. Her name is Elizabeth.
www.our-sma-angels.com/elizabeth

CCK week-end (Spinal Muscular Atrophy Type 1)

Lizzy had a GREAT week-end with lots of her friends at Courageous Kids in Kentucky http://www.courageouskids.org/ . I believe they said 24 families were there. I know 21 SMA families and a few families with other diseases.
This is such a great place for kids with disabilities in a "Safe" atmosphere to act like kids. This was SMA Weekend.

Elizabeth was a little "social butterfly". She would run off in her power chair then come back to be suctioned a few times. She did awesome. She played with Emma. She got to see Ben (Counselor)that stole her heart last year. Amy (Counselor) helped Lizzy paint an airplane and many other things. Amy was great to Lizzy also. She has changed so much this year. To see her act like a regular kid took my breath away. I loved it. We got to see so many kids. We saw MJ, Annah, Nick, Emma, Emily, Jenna, Dani,Jacob,Erinne,Roman,Mary, Haley, Alex, William,Conner, Chase and many more kids. It was awesome to see these kids and their families.


Lizzy did so well. No extra coughs or any incidents at all. It was just wonderful. She a rode a horse, she made Yak, bowled, she painted an airplane, She helped Ben make her a bracelet(with Ben and Lizzy beads)and much more. She did the dance train and had a great time. She was in her power chair for hours.
The counselors are the greatest ever!! They just love the kids
This place is like a dream to us. I wish it was more than once a year.

Lizzy slept all the way home. She never naps usually

Lizzy is doing great these days. The power of prayer her meds,her diet and her daily routine has all added to her strength. She is unbelievable. All these kids are unbelievable.

To see all these kids we have known was great. We all are from all over.
Lizzy is so excited about the FSMA Conference in June. She can not wait to see some of these kids again.

Elizabeth's doctor from Madison lost her Mother last week please add her to your prayer list. DR.Schroth: We have you in our prayers. You are a big part of our lives and we hold you very close to our hearts.


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

Spring or Winter? (Spinal Musular Atrophy)

If the weather here figures out if its going to be winter or spring I think all our lives would be a lot healthier.

Lizzy had a big week last week and so far this week. She had an MDA Lock up last week,shopping trip, speech therapy, she got a new purple stander, her wheel chair adjusted (because she grew so much),colored Easter eggs with Rachael and Caitlyn, and a trip to the Moose Lodge in Streator,IL
The shopping trip we went to our favorite Health food store "Naturally Yours" in Normal and to Krogers. Lizzy had a blast.

She has been really surprising me lately on the stuff she says. She is growing up so fast. She is so smart and such a neat kid.
She still has some thicker than normal secetions after her illness but she has been doing great.

Next week we are going to Courageous Kids in Kentucky. We can not wait to see so many of our friends.

I have been talking to a father that is waiting for the diagnosis of their daughter of 5 weeks. Mom and Dad are both carriers of SMA. I can not even imagine the nightmare these parents are going through. Not knowing is the worst because how do a treat a child with out a confirmed diagnosis of SMA. I gave him DR. Schroth's info.Please add them to you prayers.

After several applications all over the country not many responses yet for a job for Paul. He is so depressed. The new company has not called him back to work. No Union board members have been hired back. Its been so hard for us. This is the worst it has been for us since we were married over 34 years ago.

I will update more later.
We Believe in Miracles!!!!!
www.our-sma-angels.com/elizabeth

Back from Madison (Spinal Muscular Atrophy type 1)

We are back from Lizzy doctor visit in Madison,WI. Lizzy has seen DR.Schroth since she was 8 months old. I have to say it was one of the best ever trips we have taken to Madison and doctor's visit. Dr. Schroth was excited Lizzy was doing so well and HER LUNGS WERE COMPLETELY CLEAR!!!!!!!!! Tens day of around the clock treatments paid off. Knowing what Lizzy needs to gets better makes my job as being Lizzy caregiver so much better. I could of not of done it with-out Christen's help. I was very drained after my illness and we worked together every 2-3 hours around the clock. DR.Schroth did say she probably did need to be in the hospital she was so sick but.... we did a great job getting her well.

Elizabeth is 27.1 pounds 41+ inches long(The crowd roars) !!!! She has gained even during her illness!! Shocking considering she was only on donor breast milk, tolerex and pedalite for two weeks with her supplements for two weeks. I am shocked, stunned amazed and thrilled. I was making 1000ccs of her formula at a time using 20-25 ounces of breast milk, pedilite and 1 pack and 3 tablespoons tolerex. I tried putting her back on her regular diet of 16 ounces a day of breast milk, Baby food and tolerex and water and she was having issues being choky so I put her on back on her miracle mixture. She had diarrhea for days and lost no weight. She actually gained!! She has had no tummy issues on this mixture. My theory is that they work more being ill and need more calories but with a formula they are able to absorb. I guess it worked well! These kids so so well with breast milk. It amazing how well they handle the fat in breast milk.
Lizzy has had amazing chest expansion also. DR.Schroth wanted to remeasure because she had such a huge expansion. She has not lost any strength with this illness even though she was off her Hydroxyurea for days. She is reaching her mouth again also.

Her Scoliosis is worse but not by much. Maybe 5 deghrees more. Not sure how much the Ortho Doc has to see the Xrays. She was also not laying straight for the Xrays so we will probably have to retake them. She is in the up right position more in her power chair and has grown a lot over the past 6 month. She also has not been in swim therapy since March 5. DR.Schroth is going to call Lizzy's PT Monica this week and explain to her WHY Elizabeth needs swim therapy. So. keeping my fingers crossed that Monica will listen and understand.

Lizzy is back to base-line as of yesterday and I am so happy. I was so worried she was not going to be as strong after the influenza she just got over but she is !!
Lizzy is such an great kid. Her strength and attitude is simply amazing.

We got to see Cory, Katie, Avery , Aubrey Poole, Doug, Andrea, Sophia, Lila Doebbert, Grandma Judy Bowles, DR.Schroth and Lisa(her nurse). It was so great!! They all looked great!!
Sophia just got out of the hospital after her back surgery. She looked awesome.
We spent a lot of time with Katie, Avery and Aubrey. We had dinner with Cory, Katie , Avery and Aubrey on Friday after our appointment. Lizzy loves Katie and the girls so much she wants to move up there NOW!!! Lizzy kept asking "Where is Katie?" How come she has not called??", I really like her she is so nice". She was all worried about Sophia's Mom Andrea also. " Where is Sophia's Mom? " "Is she okay?" Lizzy is just too funny.
I have bursitis and its so bad I have not been able to lift much this past few days. Its in both arms right now and its extremely painful.

Paul has been offered a few jobs out of the area In Chicago or Philly . He applied at Mecalux(Former Interlake) and they have not called him in for an interview or sent him a letter telling him to report to work. They have hired back but.... I am afraid because of his union involvement and his age they have no plans to hire him back. Pray they call him back!!! I do not want to move away from our family. Mecalux is offering the experienced maintenance mechanics the same rate of pay and the insurance is cheaper. Does that not beat all. I am not sure why they have not called him back but there is a reason. He has excellent references and was a good worker over 30 years. I am not understanding this at all. We were told something entirely different by the union. Please Please Please Pray he gets called back to work SOON!! We do not want to lose our house.

Many prayer for all the sick kiddos. We have added you to our prayer list.
We believe in miracles!!
www.our-sma-angels.com/elizabeth

Lizzy Update (Spinal Muscular Atrophy)

Lizzy had started busting the junk up in her chest the other day. Let me tell you this is the worst illness she has EVER had at home. I thought the other day she was better with no fever and the stuff was finally coming out. NOPE!!!!!!! Its been worse with the stuff coming out. She would choke on the junk and it was thick as Elmer's glue and white. It has been so bad. No sleep for me and Christen. Treatments were lasting 2 hours and still her top lobes were full. She would get done eating then I would start the inline nebs. Then again Cough after cough, neb after neb , IPV after IPV . Turning her upside down, coughing her on her side, in drainage position,Chest pt , Poor sweetie she has been such a trooper through all of this . This Influenza crap is the worst I have ever seen.
If your kids get it keep them well hydrated and treatments every 2 hours around the clock. If you can not handle at home take them in to the hospital. This stuff is BAD!!!!!!
Lizzy had high fever for two days ,Diarrhea for 4 days, on bipap all the time except for treatments, she has had anti viral meds and Antibiotics. She did not drop below 94 on bipap except a few times and then her o2 came right back up after a cough. During coughs a few days we had to bleed in o2 only 1 liter but just to help her. I have NEVER done that at home. I went through a whole box of saline and mucimist.

Today her lobes cleared out. Finally. She is doing so much better.
She also has bad break down on her nose.
WE DID IT!!!!! OMG!!!!!! WE DID IT!!!!!

I still have not held my new grand baby and have not seen him except for the day he was born. Dawn has been sending me pics on my phone every day. I have not left my room for about a week unless it was down stairs making food or soaking her masks, neb stuff , IPV etc.

We have a trip to Madison this week on Friday.
Thank you for all the prayers keep them coming. They are working.

Elizabeth- Thursday update( Spinal Muscular Atrophy)

Lizzy is turning the corner. I can take a deep breath now.....( Taking in Deep Breath) . She is desatting a bit getting the gunk out (which is expected with all the thick pluggy stuff coming out) but other than that "its all Good" . She is putting her fingers in her mouth to stretch her mouth and growling and saying "Nina.... ahhh whook at what I am doing ....Grrrrrr" . She is so ornery.
This was a super bad illness...... .... Christen and I still tag teaming her q-3 (Every 3 hours)her to get the junk out. Lizzy had me so worried. She was determined not to go to Madison.
She had it in her top lobes bad....
She came off bipap this morning for a bath with out freaking this morning and then was off for about an hour.
Keep those prayers coming!!!
We believe in miracles!!!
www.our-sma-angels.com/elizabeth

Elizabeth update (Spinal Muscular Atrophy)

Lizzy is on bipap basically 24/7 right now except for treatments. thick nasty gunk. She is maintaining 96-100 O2 on bipap no O2. She is doing well considering how sick she is. Christen and I have had to tag team her for treatments last few days. She is getting treatments around the clock every 2-3 hours. Called UW again and doc for pulmo on call said that if we can not handle it take her to the hospital but she is doing well with us doing her treatments. . Its been hard but we are doing it. We sleep when she sleeps. Treatments are taking over an hour.
Will update when I can.
Sorry I have not been online. Been too busy with Lizzy.
Keep the prayers coming!!!!!

www.our-sma-angels.com/elizabeth

Hmmmm? what to do (Spinal Muscular Atrophy)

Picture above(taken from Pontiac Daily Leader)at the former Pontiac Interlake plant with people wanting jobs this morning.
Not sure what they are offering at Mecalux. Rumors have that it is 50% of Interlake Wages. Wages compared to 1978. Too bad the economy is not like it was in 1978.



What to do?
We are supposed to fly out in the morning. I feel like a have a 300 pound sumo wrestler sitting on my chest and my ears feel like I am under water. Allergies ? illness?? I cough like a chain smoking cat(Mj's description). Christen is sick also and Dawn called went home from work with contractions besides she said she feels "strange"

DR Wang has been different to us since Lizzy has been out of the trial. She was his "Star Patient" for a long time. Last visit he was very distant to us and had his interns "take care" of us because he was so BUSY. Here is our Choices: Taking Lizzy off the medicine , have none as back up in case she starts losing strength, go ahead and go miss the possible birth of my six grand-child or just go sick to get away from all the drama in our life this past few weeks. I say "Lets Go" because I can not be around a new baby not knowing if I have sinus drainage or a virus, We can take Lizzy off the HD for two weeks before our next visit and see how she does then from there figure out what the plans will be in the future. I do not want Lizzy coming down with whatever I have if I am contagious . I am taking precautions but geeze Louise I dont want her to be stuck in CA with her sick.
So, what do you do???
Prayers for us on our trip , Dawn, the former Interlake Workers , their families and all the people with out work.
We believe in miracles!!
www.our-sma-angels.com/elizabeth




Article below from the Pontiac Daily Leader today:

By Sheila Shelton
Pontiac Daily Leader
Tue Mar 10, 2009, 12:34 PM CDT



Pontiac, Ill. -
As job-seekers lined up for openings at the former Interlake facility, a demonstration was expected to take place.
Former employees of Interlake Material Handling Co., 2 Industrial Dr., held a demonstration beginning at 10 a.m. today in front of the plant today to show what can happen when a company files bankruptcy.
“We want to bring public awareness to the lack of worker protections in the law when a bankruptcy occurs,” said Ralph Timan, president of UAW Local 2488, which represents workers at the former Interlake plant.
United Fixtures Inc., the parent company of Interlake, filed for bankruptcy earlier this year and was sold in bankruptcy court in Delaware last week. The new owner of the facility is Mecalux of Spain.
The more than 200 employees at the Pontiac plant were terminated on Friday. The official sale to Mecalux was expected to take place on Monday and the new owner, Mecalux, announced that it would be taking applications for employees today at the plant.
“The former owners of Interlake used the bankruptcy filing to purge debt owed to suppliers, vacate the union contract and terminate all employees of the company,” said Timan in a press release. “Due to a lack of employee protections in the U.S. Bankruptcy laws, the new owner, Mecalux, is not required by law to offer continued employment to any of the workers at the plant.”
Timan also said that workers did not receive payment for their earned vacation pay, nor did they receive a severance package as negotiated in their union contract.
“Workers and their families face an enormous uncertainty about their future. Further, their community (Pontiac) is impacted by growing joblessness during these challenging times,” said Timan.

Grim Reality for our Future or new beginning? ( Spinal Muscular Atrophy Type 1)

Picture above is the workers leaving Interlake on their last day.

Lizzy's Papa, my husband for 34 years, father to 4 children lost his job yesterday that he had for over 30 years. Our only financial stability just closed its doors on us. He is an emotional mess not knowing if he will be rehired (at a very much lower rate as offered before the Bankruptcy with him paying 100% of benefits himself). discriminated against due to his diabetes or his age. Now, he has no teeth due to a severe infection. He hopes to get teeth soon but what do you do pay the house payment and utility bills or pay for dentures so somebody will hire you? He has an excellent resume. I am proud he has basically always worked.
Will we lose everything like my nightmares have foretold? Will we he find work some place else? There is not much left here in Pontiac as options for employment
You think your life goals have been pretty much achieved raising kids and looking forward to your retirement in 10 years then BOOM the pressure and the stress is thrown at you. We were hoping/praying for a miracle to keep the business from closing but at least we have had 30 years of secure living.
The road we have been on since Lizzy was diagnosed dealing with denials and recent medical professionals denying services should of least prepared us for this but it didn't. Its easy to say you want to move away but the reality that your family is all here kind of stops you from venturing out to another geographic area.
So, here I go again brushing myself off and starting over with a positive attitude(I am trying any way).
I still believe in Miracles and the power of Prayer!!

www.our-sma-angels.com/elizabeth



Article below from Local paper The Daily Leader



Sheila Shelton
Pontiac Daily Leader
Sat Mar 07, 2009, 07:02 AM CST

--------------------------------------------------------------------------------



There were people giving hugs, as well as handshakes, as they bid each other adieu Friday afternoon at Interlake. Horns from cars and other vehicles blared as the workers left the parking lot shortly after 4 p.m.
To many, it may have been the sign of people primed to enjoy the rest of a beautiful afternoon and a couple of days off.
Unfortunately for this group, the appearance of joy only shielded the grim reality of the fact that these people had just left Interlake for the last time. Come Monday, the company will be officially sold.
The president of the United Auto Workers Local employees said Friday was a very sad day at the Pontiac manufacturing plant.
“People are pretty upset and pretty glum inside the plant today,” said Ralph Timan, president of Local 2488, which represents Interlake Inc. Timan spent the day Friday inside the plant that still employed more than 200 people, including union workers and administrative staff.
Timan said the Illinois Department of Employment Security has set up special work sessions to help the Interlake employees. He said a rapid response team from the department would be assigned to Pontiac to help out the employees.
“The sessions will be held at 9 a.m. and 1 p.m. Monday at Pontiac City Hall, 115 W. Howard St,” he said. “This will give employees a chance to sign-up for unemployment benefits and will also explain to them what COBRA benefits will be available to them and for how long.”
Timan said everyone working at the plant had been notified that they were terminated as of 4 p.m. on Friday.
“Their benefits through Interlake will remain in place through the end of March only,” he said. “So it will be important for the people to find out exactly how to plan from this point on.”
Timan said he could not speak for the future of the Pontiac plant, which will now be operated by Mecalux Inc., of Spain.
“I do know that there are signs posted in the Pontiac facility stating that Mecalux will begin taking applications for employment on Tuesday, March 10,” he said.
The final sale of United Fixtures Inc., parent company of Interlake, is expected to take place Monday in federal district bankruptcy court in Wilmington, Del.
Pontiac Mayor Scott McCoy said Friday afternoon that he is encouraged by the fact that Mecalux says it will be reopening the Pontiac facility.
“The new owner re-hiring is certainly encouraging news,” he said. “This seems to be following exactly what the sale agreement said would happen. Pontiac is in better shape with the rehire and we are not losing an employer as so many communities are doing around the country.”

One of The Worst Weeks Ever (spinal Muscular Atrophy)

This morning was interesting as I had a call from the Patient Relations person at our local hospital. She is investigating Lizzy's PT refusing to continue services. She was confused on the "why" also. The director of rehab is in Chicago so it will be next week when she gets back to us. I could not let this one go by. This was too much.

Its been a heck of a week.
My husband loses his job tomorrow for good. They are all terminated. Office people included. The paper says "lay off" no.... its terminated . The old company(Interlake) is trying to postpone their hearing about cancelling the contract with the union till later this month . They owe the workers severance pay.

Any way I can go on and on but its not going to do me any good. What is done is done. Its time we get the heck out of Dodge because its sounding like we will lose the prison also. So, real estate just took another nose dive here. So, much for making money on our home we bought 18 years ago. I do not know how we are going make house payments, pay utlities etc.... We just have to though.
I have cried myself to sleep all week long so far. I have to remain positive for Lizzy but man its getting harder and harder to do that. The good thing is I am so looking forward to our trip to Stanford next week. Just to get away for a few days and let my mind rest. Only bad situation is that Dawn is due and ready to have the baby at anytime. We can not cancel or Lizzy will not get her medicine. She is down to the last days on that.
On a good note Lizzy has bounced back and doing great. No more plugging. I had a wonderful mother send me some breast milk for Lizzy. I have more coming from more moms when I can pay for it being sent over night and I have a donor that will give Lizzy her breast milk every month starting after we get back from CA. I have some surrgate moms that have offered to help too... So. things are looking up. Only thing not sure how to count Lizzy's cals on the breast milk so I will have to go back to 20cals an ounce figuring her diet. Lizzy has been on 22-26 cals an ounce from the donor bank. I hope my doc gets it approved for Lizzy again. It was so hard finding a way to get cals(fat) into her diet with out problems. Its been working well for so 3 years now.
So , please keep us in your prayers.
We believe in miracles!!
www.our-sma-angels.com/elizabeth

The last days of 30 years of service (spinal Muscular Atrophy)

Well, the time has come and our fears have become reality. The Company Mecalux has bought Interlake. The article from The Pontiac Daily leader is below.
My husband has worked hard for over 30 years at Interlake.

Then the kicker today..... Lizzy physical therapist Monica at ST. James Hospital here decided that Elizabeth no longer needs Physical therapy(water therapy). Its not insurance denying Elizabeth. Its her Monica that made that decision. She decided all her own that she was done with Elizabeth. Water therapy has kept Elizabeth strong and moving. I lost it.... I asked her what is it with you all in this area? You are just giving up on Elizabeth ? What else people?? Come on.......enough is enough..... If we had a way to sell our house and find Paul a job we would out of here. This is turning into a nightmare all these things happening to us.



Lizzy has been plugging since Saturday. Not sure what is going on. She is better today

We got a few donors that are donating breast milk and I am so very much relieved to hear this news for Lizzy. The donor milk bank quit sending the breast milk she needs to survive. She has a fatty Meboblism disorder and it took years to perfect her diet. She needs breast milk due to her disease. She is also feed through her g-tube.

The article on Interlake

Pontiac, Ill. -
Word reached Pontiac this morning that Mecalux of Spain was the only bidder in bankruptcy court for the sale of United Fixtures Inc., which owns Interlake, Inc. but all the news was not good for employees.
“It has been posted at the Pontiac plant that Mecalux was the only bidder and that all employees of the Pontiac plant will be terminated on Thursday of this week,” said Eric Monical bargaining chair of Local 2488. “These employees include approximately 200 members of UAW Local 248.”
Monical said he has been on vacation from the plant but was going out to the plant this morning.
“I am scheduled to meet with Ralph Timan sometime today. Ralph is the president of Local 2488 and we will see where we go from here,” he said. “We, as union members, come Thursday absolutely have no guarantees.”
Monical said it is his understanding that Mecalux will terminate all the employees (union and non-union) and then begin interviewing to refill the positions.
“We would all have to reapply as non-union potential employees,” said Monical. “The union will be recognized only if Mecalux hires back more than 50 percent plus one of the current union employees.”
Monical said it is his understanding that the termination of the union employees is also being considered by the same bankruptcy judge that approved the sale to Mecalux.
Timan told The Daily Leader, in a February interview, that if other companies made bids in the bankruptcy court prior to March 2 there would be an auction among bidders between Monday and Wednesday of this week.
It was the failure of other bidders that led the bankruptcy judge to be able to finalize everything on Monday.
Timan told The Leader this morning that he really doesn’t know when the judge will rule on the status of the union at Interlake.
“There is no guessing when he will rule on the petitions submitted by the lawyers for the UAW,” said Timan. “We believe our collective bargaining agreement should be upheld.The sale is expected to be finalized this Friday in bankruptcy court. Does that mean the judge will rule on our petitions then? I have no idea.
“The United Fixtures entity is going away. Interlake is no longer a business entity and it was the one paying all of our benefits,” he added. “A company which no longer exists and was dissolved through bankruptcy can be difficult to have openly honoring contracts. But the other side of this is Mecalux — the new owner — with no employees. How this will all play out we simply don’t know.”
Timan said there is no indication of when Mecalux will begin interviewing for positions here or how many positions there will be.
“I am hopeful that today or tomorrow Mecalux will announce they will begin taking applications immediately. All we are hearing so far is that they intend to keep the Pontiac plant here and operational so we know they need employees,” he said.
Say some prayers for us we need all we can get!!!!!!

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