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

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


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

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

Tis the season to be start writing your list for what you are going to buy your friends and loved ones. Usually, I get a warm fuzzy feeling just thinking about what I am going to buy for who. This year is the first year that I can remember where I am actually worried if Paul and I buy presents if we will have the money to live on in January. The kids talked him into a gift exchange where we only buy two gifts. Which I was very upset about but..... knowing what I know now I actually get sick to my stomach thinking about shopping. My husband's plant where he works may just shut down. They have laid off many due to the economy. He was down-graded and lost $2.00 and hour. Then the utilities have went up. Our water bill just came in and its $72.00 for one month. That is just water. What is up with that? Now since its cold the heater has been on so what is the gas bill going to be? I am shocked at how things just keeping going up and then my husband pay goes down? What is wrong with that picture? We are trying to figure what to do. We can sell the house but the upgrades have not been finished and with Paul being in a sort of depression he has been in I don't see him completing those tasks anytime soon. The kitchen has half new cabinets in that I bought that were demos a few years ago. The tile floor is done and Lizzy's Dad helped with that. Every time I say anything about it I am "Nagging" I give. I don't know what to do about getting it finished. I am getting a part time job as soon as I can after the holiday. I can not take it anymore. I will get these things done myself. If he loses his job we are out of here. Moving up by Chicago or Wisconsin. Where ever he can get work . This is really scary. I have college behind me so it will be easier for me to get a job plus I have also worked as a Hospital cook, Bartended and management in retail.
Enough.... Of that.

Lizzy is doing well. She is out shopping with her Mom and Dad to get her friend Payton a birthday present for tomorrow. The kid was worried about going all day. She kept saying "I need my Mom so I can go to Walmart." She said it probably close to 40times today. It got dark and she was worried she would not be able to go." I made sure they kept their promise to her tonight. She has a face mask on so she doesn't get sick. Lizzy is so much my heart. When I put her to bed every night she says "Nina I just love you." I say how much? She says "to the moon and back"

We are having Thanksgiving at Dana's house this year. I told them Lizzy is taking her power chair too.

I haven't heard much about our prison except they got them to stop transporting prisoners out till Dec 1st. Scott McCoy our mayor here and Dan Rutherford State Senator are working HARD to keep it open. The Governor has actually paroled men that have got out and killed people. Yeah..... REALLY . You know that actress that recently lost her relatives in Chicago to a killer? That guy accused of doing the murders had got out parole here In IL after serving 7 years for attempted murder and with the governor's NEW Plan all these hardened Criminals are getting out!! Scares me!!!!!

Here are two articles on what is happening here.

http://www.pjstar.com/opinions/x2067099653/Adams-Hudson-link-a-red-herring-i
n-prison-saga

http://www.suntimes.com/news/mitchell/1290133,CST-NWS-mitch20.article

Lizzy doing well (Spinal Muscular Atrophy Type 1)

Lizzy is doing better. This morning though, I got out two HUGE plugs in her nose. She kept saying she had more...... OMG..... it was unreal but I got them. Thank goodness for those nasal acorns we have. If not for them I don't think I could of gotten the plugs out. Lizzy even went to swim therapy today and LOVED it!! We just put a mask on her and took her in the hospital. The OT that was helping today I actually handed her a mask since she said she was getting over a cold. Lizzy has not been in water therapy for awhile so this was great. DR.Schroth said we could take her. So, we are going to take her to her therapy sessions unless she has a fever. Swim therapy also breaks up stuff in her trunk in her chest. She did excellent today. She is actually taking a nap right now. Rare occurrence for her.
No green gunk just white and clear. Yey!

We heard about a almost one year old baby girl that passed away today because of this disease. I hate SMA. I flipping just hate it. It takes the life of little babies and so many kids. We will pray for this family they will be in our hearts.

Better again.... hopefully (Spinal Muscular Atrophy)

Lizzy seems to be doing great today. I am NOT understanding this but I am happy she seems to be a lot better than yesterday. She has more secretions but everything is clear. Thats a good thing if she just keeps improving. Then I will not be so worried. She loves being in her power chair. She is too funny. She likes driving into the kitchen just to throw stuff away all day!! "Nina I will be right back I need to throw this away." Then off she trots. She is not as naughty and she has been. Maybe because Mom was gone all day. Hmm? Lizzy and I read books, watched Harry Potter and just talked about "Stuff" today. She was in a great mood all day.

Addison K our friend was admitted to UW in Madison today. She is the best hands. DR. Schroth is the best in our eyes. Prayers for Addy

Dr.Schroth called last night to check on Lizzy and she is also not understanding this either with Lizzy. We are getting cultures done to see what is going on. Lizzy told her she was sick and that she has been bad. Yeah..... that is my Lizzy she tells it like it is.

Prayers to all the sick kids !!!!! Spring is how many months away?

Long week (Spinal Muscular Atrophy)

Lizzy is getting better but gosh..... she still has gunk. She acts totally fine and better then thicker secretions pop back up. She has been off antibiotics for three days and I am still doing extra treatments. Its been a week today I guess so I need to relax and just keep doing what is needed and not worry so much. Easier said than done. Its seems like weeks. She actually has been sick off and on for three weeks.
Its been an interesting week.

Paul was home sick from work yesterday and still sick today. I have not seen him this sick in long awhile. He has something totally different than we had. He is keeping his distance.

Its cold and they are calling for snow. Now the reality of Christmas has sunk in about a month. The kids are forcing us into name drawing. I do not want to do that even if I have to buy everyone something little. That is not how we do Christmas. So this is going to be a new experience for Paul and I. Some how we always do Christmas. It been harder since I have not been working and taking care of Lizzy but we always done it some how.

Many prayers to Ethan T and family. Ethan has MAW trip. They left today from Connecticut driving an RV.
Prayers for all the sick kids and all the people not feeling well.

I hope things start improving for all Americans VERY soon.

Update on Pontiac Correctional Center:

AFSCME Council 31 is sponsoring a "March on the Capitol!" in Springfield on Wednesday, November 19. There will be a rally at Illinois AFL-CIO, 534 S. Second Street, Springfield at 2:30 followed by a march to the Capitol, a few blocks away. The intent is to let Governor Blagojevich know that we say NO to closing Pontiac Correctional Center.

Feeling better/Another medicaid Insurance Denial(Spinal Muscular Atrophy)

Elizabeth is feeling a lot better. Her nose is still full of stuff but she assures me she is ALMOST well. I think this illness is going take awhile to fully get over. She was still on Q-3 till 6am. I was getting ready to start a treatment at around 6 am she said "Nina I just want a cough and suction. I don't need nothing else" So we have went to more coughs and less nebs today since she flowing. Her treatments are going pretty well. The gunk went from thick white gunk to clear to thinner white gunk. She is still drooling like crazy

Lizzy was denied her RSV shot today . My stomach sank to my feet when I heard that. Imagine that? They said (The Dr for Medicaid here in IL ) "Since she is 5 years old her immune system should be strong enough to fight off RSV now". According to out doctor's nurse here since she said she talked to him on the phone for a long time today. So, much for all research they did about SMA Type 1s. I have contacted DR.Schroth but have not heard anything yet. So, we are in panic MODE. I dont know what else to do. Cancel all her appointments and stay home all Fall/winter? Cancel Holidays? No one comes in or out? We are careful but you never know who is coming down with what. Last year she didn't start the shots until December. If she gets RSV we are talking about several days hospitalization. If she gets RSV with having the shot it is not severe and with out the shot she could die. They just do not get it. She is only 24 pounds so its not like she will a huge amount.

On a good note the Xopenex was finally approved. I do think Senator's Rutherford's office had something to do with getting it approved. Thank you Peg if you did.

Lizzy was in her power chair tonight and ran over her Mom so she got put in the corner with her chair off for 5 minutes tonight. You should of heard her. "I can not take this any more, This is terrible, You are so mean to me Mom, Oh my gosh Nina what time is it? " She did this for 5 whole minutes non stop. I had to hide my face I was laughing so hard.
God Love her she is such a little character with so much spunk and always something to say!!
Pray Lizzy can get the RSV shot or we find a way to pay out of pocket for it. I am just sick.

Lizzy is sick (Spinal Muscular Atrophy Type 1 )

Lizzy woke up so sick this morning. 102 fever at 3:20 am this morning. I have been doing treatments more then q-3 and some q-2 1/2. Heart rate was in the 170s!!!!! She was in the 120s and 130s 10:30 pm tonight . O2 is staying at 97-96 so that is good. Her heart-rate is usually in the low 100s awake and drops to the 70 and sometimes high sixties sleeping.
I have gotten almost everything ready just in case a trip to Madison. Hopefully it will not come to that. I pray I can do this at home but if she doesn't remain stable on with her O2s we will be going but so far its just been stressful worrying about her but no low o2. Her higher heart rate scares me. She had thick white gunk but it has started to thin out.We got her back on Zithermax but it she has what we did its viral and the antibiotic will not work ugh..... I have not fully recovered myself. I am very tired. I even wore a mask to sleep almost all week in so she didn't get her sick .. I even washed my hands an sanitized more than normal. I used gloves for treatments I wore a mask constantly. Lizzy's father on the other hand was sick 3 days or more days before me and did not take as many precautions!

Lizzy has not been this bad in a year.

Just finished another treatment and she is doing better. She is on her magic mixture of pedilite/Breast milk and Tolerex .
She feels she has had too many treatments today. Glad she can keep her humor up. She is been very hyper today and has talked non stop.
Love her with all my heart. She is my girl. She has spunk and determination,

Please add her to your prayers.

This is the 3rd time she has been sick in two months.

On a good note Senator Dan Rutherford's asst Peg will be trying to figure what is going on with the insurance denials for Lizzy.

Medicaid Insurance Denial for daily Med(Spinal Muscular Atrophy)

On Tuesday we got a phone call from the local Mom and Pop drug store after we had called in refills for one of Elizabeth's daily meds XOPENEX saying it was DENIED and the doctor had to get prior approval before she could get it. Okay.... dealing with something like this has been what has happened to us several times for things recently. I calmly told Christen(Lizzy's Mom) and she called the doctor's office and they said they would take care of it. So, after talking to out docs office and they saying everything is approved we went to go pick it up and the pharmacy said its DENIED still. Okay...... Lizzy has been getting this med since she was 17 months old. She is now 5 years old. This is a daily med what the heck is going on??? Called the doctor back and they said this morning after they got the approval they got a call back saying they needed a Letter of Medical NEED for it . So to get an LMN he has to dictate a LMN and transcriptions has to write it so it will be awhile to see if its gets approved. THIS IS A MED SHE USES DAILY!!!!!!!

Okay, I am so upset it is not funny. In the past month Lizzy has gotten all her equipment applied for with LMNS denied. IL Governor Blagojevich has used the money for special need children to fix our roads. That is totally wrong. I do not know what to do but I will find a way to get her what she needs.
She has been denied in the past 2 months:
1.) MANUEL wheel Chair(hers is too small for her(and also borrowed) and we do not have a way to push her in her power chair when she is sick . She can not sit when she is sick. No Adult controls)
2.) Adult push handle and controls for her power chair
3.) gel pads for her power chair arms (since the metal arms put bruises on her arms)
4.) Stander (we had a borrowed one until she grew out of it)
5.) a desk top for her power chair (so she can use it for school work)
6.) Had to get a prior approval for Carnitor a med Lizzy has to take every day and it took weeks to get it approved
7. Xopenex a daily nebulizer treatment

Okay Governor Blagojevich tell me how all this road work is more important than these children? You suck

Obama-wins!! This is History!! (Spinal Muscular Atrophy Type 1)

The people of the USA have spoken. They wanted a BIG change.
I (I am sure many others also did) sent letters to Barack Obama about the SMA Acceleration Act and if you look in the current NEW FSMA Directions magazine its in the legislative update he is a supporter of it.

He also has helped us with Lizzy as some of you do remember.

He is a great guy/American with vision. He cares about our kids and the American people. People all over the world are celebrating his win. As I am. He loves his family, He is religious , loves his country and HE LISTENS . We needed some one with family values and with a great vision on the way things should be.

So, many people wanted change, the polls showed and I think that is why Obama was made president elect.
Those southerners(People I know anyway) that are objecting about McCain are not people who can handle change and are very bias. They do not understand politics and are ignorant about what needs to be done to get this country back to the way it should be. What are they going cause another civil war? Get real people and grow up and face facts. The way our country was heading we were in big trouble. Lets just see what he does.
I studied political science for two years in college and learned so much and started listening and watching.

I think he will make these lazy families that keep having babies and do not work ACCOUNTABLE for their actions. The ones that abuse the system.

Plus, Sarah Palen in the White House? She might be a go getter but to put her in the White House when she could not even answer one question at the debate directly tells me she is not person for the white house if something was going to happen to McCain who showed many times his temper in public. She dogged Obama badly and lied numerous time.

Lizzy voted with us yesterday and told everyone she voted for Obama. I was in the kitchen doing dishes and she kept running back in forth saying " Nina they said Obama is going to win" . and "They just said it again!! "

Both my parents voted for McCain and they are not talking to me today. LOL They too do not handle change well and seeing in their eyes a" Black" as president is too much for them to handle. So...... its best I do not discuss this them for a very long time.

Lets just all see what he will accomplish in her 4 years.

I am not going to get into any more debates about this. Its over he won and I think its fantastic!!

When his office helped us with some issues with Elizabeth a few years ago I said at that time he needed to run for president because he CARES.

Congratulations President-Elect Barack Obama.

Vote - it is your right as an American (Spinal Muscular Atrophy Type 1)

Please vote tomorrow if you have not voted early. It is your right as an American.
This will be one of the biggest most important elections in history. We have the best country in the world!!
I will probably stay up all night tomorrow night until I find out who wins.

We are sending prayers to Barack Obama and his family. Sadly, he lost his Grandmother in her sleep last night.

Obama's office helped us when we were not allowed to fly a few years ago. Lizzy has a feeding pump and the airlines refused to let us fly because of it. We got a free flight(That we used to fly to CA for Lizzy drug trial also) and gas money for all the trips back in forth to Chicago(We live over 100 miles south) because of how they helped us and the feeding pump was put into a different category and we have had no problems since. His office was so great in helping us.

Lizzy is doing great. She had on Barbie shoes and turquoise knee highs socks today from her friend Lauren and thought she was something. She loves shoes and cool socks. She was driving back and forth from room to room today just having a great time. I should of taken a picture of her but I did get the chance.

I am sick sitting her with a face mask on making sure I don't get her sick again. I am sick. Went to the doctor today and I have a viral infection. I am so upset and hope I did not infect Lizzy. It is awful. I have this "Killer Cough" that will not stop. My ribs are so sore and of coarse I am not sleeping because I have been UP coughing all night long. I hate the hot breath blowing in my face but what else am I to do? Got to keep my girl from getting sick.

I am very upset about that family that was accused of child abuse and then the murder/suicide of the Mom and father . The baby passed way this past week. That has to be one of the hardest most heart breaking stories I have ever read.
http://behindthebluewall.blogspot.com/2008/11/co-officer-oshell-murder-suicide- update.html


No trip to Wisconsin tomorrow with me having a viral infection.

Many prayers for the sick kids and please say some so Lizzy doesnt get sick from me.

Again I remind you to vote tomorrow!!!!!

Things are better (Spinal Muscular Atrophy)

Lizzy did not alarm at all last night. (Yay and the crowd roars) Think we have it figured out. It was both bipaps. Hers and the back up bipap. Lizzy told me it was her bipap not blowing out right. We got another used bipap and all went smooth last night. Thank goodness. I still didn't sleep well last not wanting to hear that buzzer soon as a dosed off but tonight I will SLEEP. I was a Pulse ox watcher last night. Thank goodness Lizzy got to rest.
I am thinking that using it on the inverter on the plane might be why we are having so many issues .I am not sure but we are waiting to find out what is wrong.

Lizzy was Fancy Nancy for the church party(2 blocks away ) last night . She looked just like her favorite story book character. Fancy Nancy by Jane O'Conner. Lizzy has been a fan since the first time we read her the book.


Well, we got the terrible news the Prison here is closing Dec 31. That is so many jobs. They are trying to think of another use for the prison.
I am so worried about this community. I hope they will find another use for the prison. Its a huge building. They Governor is closing many State Parks also. This is so wrong. http://www.DanRutherford.com/ for more details. Our favorite IL Senators web-site.

No sleep yet again.. feeding tube clog and alarms(Spinal Muscular Atrophy Type 1)

Lizzy has been feeling great but darn it every-time she doses off on her bipap at night the her pulse ox starts going off because of her o2 levels drop. She drops for a second and then back up to 98-100 O2. I cough her, suction her and she is not having any problems. I change her mask , I am using her back up bipap , pulse ox probe change and I don't know what is going on. She says she is fine every time it wakes her up too. Right now she is sleeping off bipap 3 feet from me. Her O2 level is 98 and her heart rate is 72. She is sleeping so well. No alarms off bipap. What is going on?? This has been going on for days. We sent her bipap in to be fixed and have been using the back up and still we are having issues. Is that one not working right also?
I will watch the pulse ox and think all is well then soon as I start dozing off there it goes off again ...... buzzzzzzzzzzzzz. Its like you have been zapped in your brain. zzzzzzzz (chill up my spine just thinking about it) . Then when I did everything I can think of and finally got her situated turned her over again I had my eye on the pulse ox I happened to notice her G-tube was clogged (she is vented). I had to get the clog out and then try to get some sleep. Then, I was worried her gtube was going to get clogged again and it did !!! OMG!!!! I got up again and took and cut the end off a q-tip and cleaned out her G-tube and sure enough there was something lodged in there. She had alarmed 5 times last night for a second then backed up g-tube. Its like she is 2 years old again. I am not used to this. It all started with the bipap messing up after she had gotten sick.
She is no longer having illness related issues but what the heck is going on? I need some sleep. She is also not sleeping because of it.
Her O2 and heart rate are totally back to base line. Treatments are going smooth. She says she is not sick and feels fine.
Pray I get some sleep tonight!!

Better day (Spinal Muscular Atrophy)

Lizzy is acting better today. She is not so demanding today and cranky. This illness is a mystery
The DME gave Lizzy a demo mask and it works well for her. Only thing is Lizzy dropped a few times o2 last night while sleeping again last night. No air leaks NOTHING. I would cough her suction her and she was fine. I am not understanding what is going on. Her O2 and heart rate are great off bipap she has had no fever. I am concerned and don't know what is going on. We got a used bipap from the DME till Lizzy's gets fixed. They said I was right her bipap was not working correct. She seems to do better off bipap. Her treatments today went normal. No extra junk. Great air movement. She says she has a headache but that is all. She is on every three hour treatments so I am still NOT understanding if she sound good, looks good and does great off bipap what is going on. She is on extra Breast milk and pedilite also so this is really baffling me.

On a good note. Charlie and Sophia are released from the hospital. Sophia is on her way home. Both kids are doing great.

Prayers for Logan H he is not doing well. He has his air ways start to close and they don't know why. Many prayers to them

I went to curves for my 5th time this week. I am starting to feel great and feel lighter.

Have a great week-end

dealing with iIllness,docs, nurses and DMES (Spinal Muscular Atrophy)

PLEASE big prayers for Charlie and Sophia D. They both had surgery to today for their extension surgery for their backs.
Lizzy is doing ok BUT she kept alarming ALL last night! I coughed her or suctioned her and she would go back to 98-99 o2 . Her chest sounds GREAT. Great movement. It had to be the BIPAP. She is satting great with out bipap. I am not understanding what is going on. UGH Secretions/junk are thinner. Her Bipap sounded weird(Motor) so we had to send it in to get it fixed and they got us a used one which I just totally disinfected it . They said Lizzy's bipap was not working right. That was a hassle also. You have to call this person and then call this person to see if that person got the message. New Policy changes at the DME.....
Sorry my mood sucks today. No sleep last night .
Lizzy had started green gunk yesterday and TONS of secretions. Went through sooooo much bull yesterday getting her on an antibiotic She had low grade temp and/ is a total crab.
Lizzy's local doc was gone so the Nurse Practitioner ordered Lizzy ( You are not going to believe this one...... ) Freaken Robitussin!!! ... After I waited all day for them to call back with a script for an antibiotic. That is what they called and told me. Voicing my opinion got me no where. They know what Lizzy needs and they also usually always give us what we need for Lizzy. It took till 4:20pm yesterday to get that call.
I was so upset I called up to our specialists office only to get a recording from the number I used to call to talk to the nurse and it said they are "NO LONGER TAKING PATIENT CALLS ON THIS LINE" with no details only if you want to make an appt a number to call. I call Lizzy's specialist 's asst Lisa (she is a super great person)and she gave me a number to call. The doc on call called back and he informs me Elizabeth has what ever one else has and its not from the flu shot or she would of had symptoms the next morning after the shot. He was very "Dry" but called me in the script for Lizzy with no problem. It was such a frustrating last few days I already hate the season and its just started.
Lizzy is doing better tonight but is very cranky keeps repeating herself when you do not give her what she wants right now and will no nap today even though she feels like crude.
I did leave to go to Curves today so I did escape for an hour.

I know I am rambling. I think I am taking Lizzy to bed early and call it a night.
Any way special HUGE prayers For Charlie and Sophia.
Prayers for Lizzy and MJ too!!
Gosh I love my life some days!!!!!!

Lizzy not feeling well and a Losing start for me(Spinal Muscular Atrophy Type 1)

Lizzy is not feeling herself today. I am not understanding what's up. I hope she is not getting sick. She has been so whiney all day. We have a trip on Thursday to Madison (For OT appt) so please say some prayers for my girl that she is not getting sick. Only thing different is that I had to change her bipap mask to a golden seal from her profile light. Her mask had a leak and she would not wear any mask but this one. Her DME would not send us a new one. We have to wait a month to get her a new one. So for now this is working. Her sats have been good. I just think she is tired and feeling puny. I pray that is all.
I worry so much when Fall hits.

I did it!! I lost 6 pounds and 6 1/2 inches!! (hear the crowd roar) . OMG! I feel better too. Its not a lot but its a start . I am actually leaving the house ALONE 3- 5 days a week and going to work out at curves . I am with actually adults OUT-SIDE of my house. I have not been out (with out Lizzy ) much in almost 5 years.
Hey, I also found this video online that also helped me feel better too. http://pauleugene.com/ This guy really does a great work out. So, I can get myself back in shape doing both. I felted so "pumped" when I got done with only about a 10 min work-out. He also has some videos on You tube.
I have been doing Curves a month now and I think its the best thing I have done for me in a long time.

Time for Lizzy's treatment.
Hope you all are well!!

Speech eval , Tiarra and Tea - living with Spinal Muscular Atrophy Type 1

Lizzy had a busy week.
She had PT with Monica on Tuesday and then she had a speech eval with a new person in her life Allison on Thurday. Allison her a new speech pathologist. She said Lizzy talks very well and thinks I have done excellent with her exercises her mouth and keeping her muscles moving. Lizzy is 5 and has lost minimal facial movement. She did quick sort of IQ test on her and after some questions to Lizzy she determined that Lizzy is right on track for her comprehension levels and knowledge for a 5-6 year old. She was quite shocked Lizzy is a Type 1.
Allison was upset we have more or less slipped through the cracks and no one has (here) has thought Lizzy needed speech therapy. It is sad the life expectancy (Which was 1 1/2 -2 years old) has held up so much. Its like no one wanted to help us at times because they thought she was not going to be here any way. BUT GUESS WHAT ??? LIZZY is still here and going strong. Allison is going to help me with Lizzy's stimulation in her mouth. She said she will help me maintain her facial muscles and maybe even be able to help her more than I can do. I have worked for years keeping those muscles moving and making sure she uses them. Lizzy still does the Elvis lip curling imitation also. She made Allison laugh.
Lizzy and I agreed we think Allsion is going to work out just fine.

Lizzy got all dressed up in her tiarra with Rachael and had tea today. It was too funny. They had tiarras on, all the bling you could imagine they both cracked me up. Lizzy was talking in this strange little pretend voice.

Hopefully this week we will be going to Madison and get Lizzy fitted for an arm brace. We will get to see Charlie his sisters and Sophia. They both have spinal surgery this week so please keep them in your prayers.

Time to go do some baking.

Its actually been so chilly here that the heat has been on at night.

We are home from CA / Spinal Muscular Atrophy

Our flight was very late last night. We didn't get home till around 12am and after Lizzy's nightly treatment routine it was 1:30am before I even got her to sleep. She still had 100ccs left in her bag when she woke up today so I let her sleep in till around 10am this morning.

The trip was the best ever as far as flight and arrangements on our stay. We went site seeing with Molly, Andy(Andrea Doebbert's aunt and uncle) , Jennifer , Jacob and Todd Goodson. We went to Pier 39 where the seal lions have made a home after the earth quake. Took pics of Alcatraz,(could see from the pier) The Blue Angels were practicing and we got to see them. (Lizzy hated the loud noise) I almost peed myself a few times watching them coming so close to hitting each other. Lizzy and I took off though when she said the noise was hurting her ears. We went to park that the Canadian geese that migrated their after the park was complete and have not returned home.
We saw San Francisco down town and their very cool houses , the Golden Gate bridge park and the Pacific ocean.
It was truly a great trip. Lizzy was something....... LOL . The night we got there it was late. I did her treatment as usual and she was doing so great. Well I got woke up from her alarming at 140 heart rate. So, I asked her" if she was sick"and she said "Lady.... I am NOT SICK!! I just want to know what is in the package up there " I said huh? and looked up where she was looking and Molly had a birthday present for her that she had not given her in a pretty package on top of a antique bureau . LOL. I laughed so hard. She finally told me she was pooping. That was the cause of her high heart rate was high.

The visit with DR. Wang went excellent and he is totally shocked as everyone how well Lizzy is doing. He said he leg movement thing she does is like something out of a ballet. Lizzy has gained more weight again and looks totally great. He spent most of his time with Lizzy and he didn't not talk much to us. He shook our hands and said she is doing just excellent and was so awed at Lizzy's movement, talking and just Lizzy in general.
I guess the media people tried to call us and told Virginia (coordinator for Wang) and told her Channel 11 news was supposed to be there. Because something had come up they canceled. We had no clue they were even thinking about doing that. Thank God we didn't have too!!! They can wait till I lose some more weight . ( I hate surprises like that) Robert Dicks the media person from Stanford came in and saw Lizzy and took pics of Lizzy and her favorite nurse for the year end report for Stanford. Robert told us Lizzy was just one the most beautiful children he had ever met. That made us feel good ans Lizzy looked at him and you could see the sparkle in his eyes. DR. Wang sent two residents in to LEARN about SMA so they got a quick detailed report from us on Type 1s and they need to understand SMA. NIV,AA diet (and breast milk) and how to help these kids stay strong by stretching etc. They loved Lizzy also.

The trip home was great except for the late flight last night

Molly and Andy made the trip so special. We stayed with them this time. Very Intelligent warm compassionate , heart warming people. They are like family to us. Their home is just beautiful.

We have to go back in March not sure when. That was something that we didn't not compromise on. No way we are flying during RSV season. We are always now taking the later cheaper flight and staying that extra day. Worked out great.
American Airlines were very accommodating on the the trip there and some of them were on the trip home. We do pretty well traveling with all 6 of Lizzy's machines.
Now just got to figure how we are going to get out there in March.

We fly out tomorrow to Stanford. Lizzy is so excited. She can not wait to see Molly and Andy . She says she wants to see DR. Wang also but tells me she doesnt need a blood test. LOL She has not stop talking all day.
We have to fly out there every 4 months to keep Lizzy on the trial med she is still on till DR. Wang is published.
Keep us in your prayers .

Tonight's update, sick kids and Extreme Make-over

Lizzy had thick gunk come out of her this morning. I have been doing extra treatments on her to keep her secretions thinned out. No fever , no higher heart rate and she said she is fine. Her treatment lasted a hour longer just for extra coughs this morning just getting her cleared out . Then..... to top it off her cough machine quit working right. The pause button is broken so I have to use it on manual. This is the one she has had for 4 years. I think taking it on the plane and where ever we go is why it got broke in the first place, . The pause button has been broken since we got back from Stanford last trip but now it will not even work unless its on manual. UGH..... Now what? Its a Emerson not a Respironics. We can not live in fear of not having what we need to keep Lizzy healthy. I wish I had the means to get Lizzy every-thing she needs. It always something. Life is pretty good to us though. Their are a lot of people that have it worse off than us. We have it rough but Lizzy is doing okay and we seem to eat and get the bills paid. We dont have much money wise but we have family and great friends that care.
Many prayers to MJ , Conner ,Sophia D and my Lizzy. Also prayers to little Gracee. Gracee had an incident today that scared her Mommy and Daddy.

We watched Extreme Make-over tonight. Good for the Akers family.!! Lizzy watched in amazement. She said "I want to go there" Yeah Lizzy me too!! We would love just to get our house finished with updates "still in progress " let alone handicapped friendly . I am so happy for such a great family to get what they needed for their family. Wow! Great people in Ohio!! Paying off their medical bills and their mortgage? Oh My Wow, that is a miracle alone let alone a new home too. Way to go!! Bless you Akers family.
Prayers for our upcoming trip on Tuesday to CA.

Friday and anticipation.......

Courtney Rosas is in the hospital in Texas is having some issues many prayers for her. Dani Pruit has been sick with Influenza Type B. Mary Kate is still in the hospital in Minnesota intubated, Sarah Van Orden is recovering from a surgery. MJ has been sick this week. Ian is also sick. Many prayers for all the sick kids. Prayers for Courtney Smith's family also.
We fly out to Stanford this next week to see DR.Wang. I get nervous every time we fly. The anticipation consumes me until we get there. We have to do what we have to do to get Lizzy the medicine she needs. I know of two kids that went off the med and got weaker with in weeks of being off it. We are not taking that chance.
How about that that debate last night? I believe the Alaska Governor avoided some of the questions. I think she is a fighter and possibly a good public official for what she did for Alaska but to help run a whole country That scares the bejeepers out of me ...... McCain .....he will take away everything we do have for handicapped disabled children. He is not here to help families like us.

Lizzy has been very whiney today and a pray its because she is tired.

I actually worked out at Curves 4 times this week. I am going to do it ! I am going to get this weight off of me.

Hope you all have a great week-end .

Family in Iowa Needing Help

I say this article and this just upset me so badly. We have met Bill, Kris and Courtney when Lizzy was at UW the first time for her g-tube surgery in 2004. They are such a great family.

DECORAH, Iowa - Meet Courtney Smith of Decorah When Courtney was just a baby, her parents noticed she had some difficulties. Courtney was diagnosed with a neuro-muscular disease called Spinal Muscular Atrophy.
"As the years went on, it's progressed and she's got a lot of respiratory issues like, just a common cold will take her as far down as to be put on life support in the PICU," said Courtney's mom Kris.
The ten year-old can't even swallow her own saliva. Her parents and helpers work around the clock to help her lead as normal a life as possible, but this summer created a whole new challenge.
"I seen the water and looked at Bill and told him, we need to get out of here," said Kris.
Like many families, the Smith's were devastated by record flooding. Their house was ruined, but the Smiths used the rebuilding opportunity to modify their house and make it more user friendly for Courtney.
"We took out a fairly large construction loan to do that," said Courtney's dad Bill.
But just as things were looking good, a whole new problem hit.
"A few weeks ago, I unexpectedly lost my job," said Bill. "I had no indication what so ever that it was coming. We've got 2 mortgages and then the construction loan, and of course there's medical expenses."
"we need to figure out a way to make our house payments and stay here. Courtney can not live in an apartment," said Kris. "We reach a point where we don't know what the outcome's gonna be."
But they say that just like their daughter does every day, they must keep fighting.
"Whatever it takes to do it."
The Smith's say they're struggling to find new jobs and care for their daughter. Bill's sister Karen is raising money to help them get through this tough time. They say and little bit will help. If you would like to help out the Smith's, donations can be sent to:
Bill and Kris Smith
719 Decorah Ave.
Decorah, IA 52101
The Smith's can provide a receipt for tax purposes if needed. You can also learn more about Courtney's disease SMA by clicking here.

Thank you for giving Lizzy the best birthday ever

THANK YOU ALL FOR THE BIRTHDAY WISHES FOR LIZZY!!!!!! SHE HAD A GREAT DAY!! She had a small little gathering birthday party on Sunday with cake and ice cream. Yesterday, she had phone calls with birthday wishes from all over the country from 9:30 Am -10pm last night. She had ecards (so many ecards)She had her boyfriend Charlie sing to her on the phone. She had our friends from California Molly and Andy sing to her. It was quite a day . She had some presents in the mail from so many people and more coming!! She even had her teacher(From Last year) stop by the house last night and bring her a present. Lizzy was dressed in her (fancy Nancy Dress LOL )Thank you ALL for what you do and have done for Lizzy. I am truely touched.I still can not believe she is 5!!

Miracle child with SMA Turns 5 today

Our miracle child and little wild child Elizabeth Lee Hallam turned 5 years old today. The specialist who diagnosed her did not give her life expectancy to 1 1/2 years old and at the most 2 years old. So much for him knowing anything. If we would of sat back and listened to him Lizzy would not be here today.
We got Lizzy out to Stanford a month after she was diagnosed and that was the best choice we ever did make. Thank you DR.Wang. Thank you DR. Willam Hough for believing in us and helping us get what we need for Lizzy. You are always there for Lizzy.
My "little princess diva" turned 5 today and is the most wonderful little girl! She is a fighter, she is ornery, she is determined and she is my heart and soul.
We have been through so much the past 5 years and now looking at the future is easy. We used to be glad we got through a day. She is so strong and so smart besides beautiful.
I was telling Christen (Lizzy's Mom) today looking at what things were 5 years ago and said " I turned in my leathers for helping Lizzy ". I gave up my life the way it was to help her and I believe I am a better person for it. I always did have a heart but I have meet so many people that are so great. I have Real friends now. Things in every day life that used to totally tick me off mean NOTHING anymore. There is so much meaning now in the phase
"Dont sweat the small stuff". My life has meaning and purpose.
Thank you all that helped me with Lizzy. Thank you DR.Schroth , Dr . Wang, DR, Hough, Lisa Watson and all the parents that have helped us through this whole journey!!!!!
Having your support and guidance helped us so much helping Lizzy!!
www.our-sma-angels.com/elizabeth

Princess feeling a bit better tonight

The Princess is doing better today. She is not whining or throwing fits. She is still getting gunk out and still not over this sinus infection yet.
She hopefully will be able to have her 5th birthday party tomorrow.
Christen went to the stride and ride MDA event in Chicago and had a great time. Lizzy and I were unable to attend of coarse. Christen got to meet Chloe and her Mom Kathleen. Christen said Chloe was just the cutest. It would of been so great if we were able to go. Lizzy just could not this time.
Our own area Stride and Ride event will be in two weeks from today and it will be a day after we get home from Stanford. So, I am not sure if we will be able to attend or not.
The Doebberts made it safely to their MAW trip in Florida!! Hope they have just a great time!!
Mary Kate is still pretty sick so extra prayers for her. Addison is also not feeling well and Dani is doing better. Stella is home now. So prayers for them. MJ said she was not feeling good either so I hope she feels better too!!
Pray for my princess so she is able to enjoy her birthday party tomorrow!!
www.our-sma-angels.com/elizabeth

Update on Lizzy

Thank you for the support and the prayers.
Lizzy is still getting thick gunk up from a sinus infection. She has been so whiny, yelling and throwing major fits . Poor sweetie is just miserable. Lizzy is on every three treatments ,extra fluids, antibiotic and will NOT NAP or take extra bipap.
She is a "tough Cookie " That is for sure.
Christen (Lizzy's Mom) is going to the Chicago MDA walk and leaving tonight to spend the night with Billie her kids Payton and McKinsey. Lizzy and I are staying away from everyone so she is well for her party on Saturday.
I just heard Aubrey is sick too and dropped pretty low o2 today and Mary Kate was intubated. Sophia S is not feeling well either. Prayers for all the sick kids. Dani, Gabby and Stella are doing better.
Sophia D is doing her leaving for her Make a Wish tomorrow morning!! Hope she was a great week!! Whoooooo hooooo Sophia!!

For more info on SMA Type 1 . Please Read Lizzy's web-site.
www.our-sma-angels.com/elizabeth

My girl is not feeling well.

Lizzy has more secretions spiked a temp and has been coughing up plugs. Here we go ugh...... I have upped her treatments have her on extra fluids and she is starting Zithermax today. So, please....... prayers our way so I can manage this at home. So I feel no sleep coming on. But that is okay Lizzy is worth every moment of extra anything!!

On a good note I lost 3 1/2 pounds in a week!!! I can not believe it. I am shocked. Yeah me!!

Got the confirmation for our Stanford appt today. We can not wait to see Molly and Andy!! We also meeting up with the Goodsons!!

Many prayers for ALL the sick kiddos!!

Hi Everyone:Please keep Mary Kate Bigelow in your prayers. She is at St. Paul Children's hospital right now. Donna took her in Tuesday night after fighting a virus all week with fever, thick secretions & high heartrate. She is on bipap and is receiving IV antibiotics.Please pray for a quick turnaround. Also prayers for Donna(her Mom) ...she had been up all night.

They are thinking about intubation.

Mary Kate is a Type 1/ 2 and is 6 years old from Minnesota

Official 2009 Spinal Muscular Atrophy Calendar

Hi everyone:

Just thought I would give you the Official 2009 SMA Calendar Update. As of today the calendar is up and is available on Cafe Press in the B4SMA store. Once again, the calendars will be $20.00 with the profits going to Marshall's Miles and SMA Support. It is http://www.cafepress.com/b4sma/1826918This calendar was designed to raise awareness and funds for Spinal Muscular Atrophy.Buy your OFFICIAL 2009 SMA Merchandise today! Proceeds from merchandise (other than the calendar) benefits B4SMA! For Merchandise, http://www.cafepress.com/b4sma/3677699This year, there are almost 140 kids that are featured. Thanks to Logan P's family for suggesting a montage, so in order to feature each kid individually, MJ has created a montage at one true media. Watch the promotional video http://www.onetruemedia.com/shared?p=69500ee4ac7d16e9a6cea1&skin_id=1603&pid=624&utm_source=otm&utm_medium=text_url . I encourage you to bookmark this montage for your convenience. For those of you that have blogs, please post this information to hopefully get more people interested in the calendar this year and to create more awareness for Spinal Muscular Atrophy. There will not be a cheat sheet this year because once you watch the montage, you will not be able to forget these precious faces.

'Tis the season

Lizzy and I have decided its best for us to stay home from the MDA walk in Chicago at Brookfield Zoo. She has some extra thicker secretions and I have upped her treatments and increased her nebs. She is not sick but I am making sure nothing becomes of this. I do not want to chance taking her to Chicago with 1200 people enrolled from the walk. Lizzy's Mom Christen and a friend of hers are going . Tis the season for the flu already !! The flu is out there I hear "Full force" and we can not get our flu shots till next week because they are not in yet here.. So its best to stay home in "our bubble" till her birthday party on Sunday. Then only to appointments after Sunday .
Then 7th of October we leave for Stanford to see DR.Wang . I want to make sure we are able to go. Keeping Lizzy healthy is my main goal!!
Just found out that RSV shots in IL will not be given until November. That is VERY scary flying with out a RSV shot for Lizzy.
Please watch the montage our friend MJ made of our CCK week-end . Its a great !!

http://www.onetruemedia.com/shared?p=6f360380c6e30c0f57131f&skin_id=1602&pid=624&utm_source=otm&utm_medium=email

Prayers for Dani, Stella, Gabby ,Leah and Lizzy (so she doesnt get sick!! )
Please visit her web-site !!
www.our-sma-angels.com/elizabeth


I apologize if I offended any-one with my previous posts. I had to vent I was very upset.

Spinal Muscular Atrophy Type 1 and milestones

I am better today:) some people came to my aid. I am so passionate about my beliefs on NIV protocol , AA diet and these kids in general.

Lizzy got her first birthday present in the mail today from the Salus family in Chicago. They have Sophia Type 1. They are a sweet family. So kind. We can not wait to get to spend time with them!! We have a MDA walk this week-end and then Stanford and we are done running all the time. Then we can meet up with them.
Lizzy will be 5 years old next Monday. What a great milestone. Its been quite a journey but I have gained a lot since it started. I have friends that are geniune and learned a whole different way of life. Things I used to take for granted I cherish now. I found this quote yesterday and its meaning is so true:
"I am the creator of my life's experience. Today and everyday I AM creating a life filled with joy, creativity, purpose, and fulfillment."
Prayers for Dani, Stella, Gabby and all the sick kiddos

I hate SMA...... I hate arrogant doctors that will not listen . I hate parents that will not listen to people and doctors that know what they are taking about.
Let me SCREAM !! This younger bunch of parents scare the crap out of me and their ways of caring for these precious wonderful kids.
Hello ....... I am venting here and super upset.
I want to be like that" cleaner dude "on tv and save all these kids. But instead of a pick up truck I need a jet and money....... I want to take care of them all . Oh.... I wish I could save them all!!
My heart hurts so bad. So many sick kiddos already in crisis with bad illnesses. The Flu has hit!!
God give me the strength so I can keep helping these people!!

Sunday

Lizzy had her neutrophils rechecked and they are awesome. Not sure why on her last blood test results she was little low but on a good note She is FANTASTIC. Her amino acids, essential fatty acids and just every-thing is GREAT. I can breathe..... Its self satisfiying to me to know what I feed her is helping her!! She never stops amazing me every day. My gosh I love her so much. She is my fighter, my heart and consumes my soul. She is such a great kid. She just beams.

I am feeling pretty great myself these days I started Curves last week. Paul paid for it. I think it will be great. So far I feel so much better when I get up in the morning. The work out is good and it will get me out of the house 3 days a week at least for about 45 minutes ALL year long. Getting out the house for a 30 minute work out will help me so much I think. Not that I do not love staying with Lizzy 24/7 but this is time for me and to socialize with actual people.

Here is a demo of the work out I am doing for me
http://www.curvesinformation.com/the-workout/circuit-demo/
Hope every one has a great week.
Prayers for Dani Pruit and Stella.

Lizzy's video from today . She is singing!! LOL
http://www.youtube.com/watch?v=7ylyj26Qwj4

Research pays off

We got Lizzy's fasting blood test results in on Monday and I have to say I was pretty excited. The Essential Fatty Acid Profile and her Aminos were just Fantastic. Actually all the results were great!! Its due to her tolerex/ donor breast milk diet!! I am just thrilled. Her neutrophils were slightly low but nothing to worry about according to DR. Kelley and DR. Swoboda. They seem think its the drug she is on. She also had gotten a sinus infection a few days after she had the test done. So we are getting the neutrophils rechecked on Friday.
Fighting to get donor breast milk and the Tolerex is so worth it !! It helps these kids!! The breast milk has "Human Fat" and it is so much easier for these kids to digest than other fats.
Lizzy will be 5 in a few weeks!!!!
Hope you are having a great week. I actually am taking an hour a day for 3 days a week and started going to CURVES last night. I don't usually leave Lizzy much but I have gained SO much weight I need to do this for myself. I hate being this heavy.

A video on the Faith's Lodge. Beautiful retreat we went in Wisconsin this summer. Lizzy and her friends in some of this. It was a great time!!

http://wcco.com/local/faiths.lodge.grief.2.819220.html

We are back from our great week-end at The Center for Courageous kids Camp. It was absolutely fantastic time. It was like we were all treated as royalty.
All the staff was so great to all of us. They showed so more interest,caring and compassion for all our kids. Lizzy had a super great time.
There were lodges for the families and they had rooms that slept 8 with your own bathroom that had 4 stalls (1 was handicapped accessible )
and TWO showers(1 handicapped accessible. They said they can house 32 families at a time.
They prepared 3 meals a day for us at NO charge. They had entertainment like Karaoke, Bowling, crafts, wood working, horse back riding, BINGO (with prizes) swimming there. It was like ( I heard a parent say) Make a Wish part 2. Its was amazing .
We had great time talking at visiting with the parents.
We got to see MJ, Chase, Jacob , Conner, Alex, Leah, Annah, Dani(for short time. She was not feeling well) and their families. It was a great time . We got meet a lot of new people too. Angel Kaydence's aunt was there too. Great talking to every-one.
Lizzy met Ben and he stole her heart. He was one of the camp's staff members. He even serenaded her with his guiter. She bonded with MJ as I knew she would. She always has loved MJ.
Quite a rememberable experience. If anyone gets a chance to go I really
suggest going!!
Now I have about 30 emails to get caught up on.

Here is Lizzy , Christen (Lizzy's Mom)and news anchor man Bob Larson WMBD News at the MDA telethon in Peoria,IL a few weeks ago.

Its almost time from our trip to Kentucky to Courageous Kids. We leave in the early a.m in the morning. Lizzy is so excited. She can not wait to see MJ , Brenda and some friends she met last summer. Its funny how they remember things after 3 years old.

Please watch Lizzy's friend Sophia's Video. Its great!!
http://www.youtube.com/watch?v=RPGClmsUPnQ

I want to thank all my wonderful friends on the amount of emails I got from my last "Venting" update. Thank you for caring. Cory , Katie, Andrea and Mary . You all are way too kind to me. I do what I do for Lizzy and all these kids.

Yes, I have given up some things in my life but in turn I have gained a lot. The close friends I have gained ,education and just my life is so important to me now. To know we have made a difference is what keeps me wanting to do more. I have always tried to find ways to fix things in my professional and personal life to make them better but never has it gotten to the point where I feel that this is the what I am supposed to do. Its so satisfying to help Lizzy beat the odds. To see her do things they say she would not be able to do its just emotional to me. Its funny thinking about about how things used to be. Its like it was another person's life not mine. Ohhhhh my weight gain upsets me don't get me wrong (Just about 100 pounds in 5 years due to my back injury) but my mind is so alert now and I just love learning more I can do to help Lizzy . Maybe I will someday be able to start walking again and buy more the things I need to get my weight back down but for now that is impossible.

Thank you all who have made an impact in our lives.

Well back to packing.

Many prayers to my good friend Karen Slavik. She lost two children to this awful disease.

She needs prayers to deal with some more major life changing events in her life recently. Love you Karen and you are in our prayers.

to view more about Lizzy visit her web-site

www.our-sma-angels.com/elizabeth

Gwendolyn Strong is a ten-month-old girl who was diagnosed with SMA1 in April. Her parents have started a petition to take to Congress to support the SMA Treatment Acceleration Act, a bipartisan proposal to increase funding for this disease. They hope to get 50,000 signatures. I hope they get a lot more.Please consider taking a few seconds to sign the petition:http://www.petitiontocuresma.com/ We need to save these babies and these kids!!! PLEASE SIGN !!