Elizabeth has grown !! (Spinal Muscular Atrophy Type 1)

Picture above is Lizzy with Tony Plattner.
We took Lizzy to get her new TLSO and AFOs today. The difference in sizes were shocking!! Its was a bit over 6 months ago she got her last ones. Wow, what a difference. I knew my back was bothering me for awhile but now I know why!! Carrying her up and down the stairs is kicking my hiney!!

We have some great news. We found a wonderful Mom willing to donate Lizzy some of her breast milk every month!! Its a miracle!! Can you believe it!! Some-one actually will donate to Lizzy!! We will get her first batch after we get back from CA. I am so excited. There are a few other moms that have offered too help us with 300 oz here and 200 ounces there also. Its that not fantastic? Mary Jo another wonderful Mom sent Lizzy some to get her through her illness and a few weeks. So, I can stop being in panic mode for awhile. She is doing so great on the donor breast milk. I hate to have to cut her back. The power of prayer !! People are just so kind !! I am so excited!!

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

Just another day in My life (Spinal Muscular Atrophy)

Things seem to be a bit better today. Lizzy is back running back and forth in her power chair getting Lexy things out of her toys bins. Too cute. She threw a major hissy fit today Christen wanted to take her to Walmart. She told her Mom that she didnt want her to take the baby because "the baby needed to stay with her and Nina" too funny.

We have had Lexy almost every day for about a month now. She is growing and so darn sweet. Lizzy loves having her around. I can actually pee with out an audience because Lizzy watches Lexy while I pee! Its great!! LOL

Elizabeth gets her new TLSO and AFOS tomorrow. She is excited. She picked leopard again!!

I am still freaking that Lizzy donor breast milk is being denied. Christen has to call back the local La Leche League. She had a call from them today but was not here and it was too late by the time she got back to call back. I hope its good news!! So, first thing tomorrow she will have to call. I emailed the senator's asst and maybe she will be able to help Lizzy. This has been the worst week I can remember in a long time.
If you have extra Breast milk and you are healthy send it to Lizzy Please!

Paul has inquired about a job in Elk Grove, IL and a few others. Maybe we will be moving. He wants to move right over the border in Wisconsin. He wants to move Lizzy to Wisconsin so she will be closer to DR.Schroth.

Time to get myself to bed so I can lay awake all night long. I can not shut my mind of these days at night. Too much going on up there.

Please pray for all the sick kiddos out there. I heard Ava has RSV and Avery is still in the hospital. MJ has been sick also

Pray for Lizzy to get help with her donor breast milk. She has been on donor breast milk over three years now and NEEDS it so bad!!!!




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

Lizzy needs your help! (Spinal Muscular Atrophy Type 1)

Lizzy is getting better every day. She has been in her power chair the last few days and doing great. Almost over this last illness.

Me on the other hand has had several melt-downs from all that has been going on. Its just never ends all the brick walls and denials for Lizzy. With our other situations going on I am just worn out. Emotionally drained at times.

I even put a post on Craig's list to see if someone would donate their breast milk to Lizzy. I am going to cut her back on the breast milk but.... its not as easy as it sounds. I have her diet perfect for her and it took many years to get here. Adding things is very difficult because she is so sensitive to food and changes in general. I think I will try adding unflavored Pedialite to her every day mixture with some other baby foods. I use it when Lizzy is sick with Tolerex and breast milk. I have been using Pedilite in Lizzy's formula mixture before she was diagnosed. She would not eat it so we had to add orange pedilite in her baby formula to get her to eat it.

I emailed the La Leche League in our area besides surrounding area and NO replies. I had Christen call and talk to an area Le Leche and because of Liability issues they are afraid to help us. Maybe Christen can induce her own milk and quit some of her bad eating habits but the doc said it would be very hard for her to do that if she can at all. I just know this denial really hit me hard.

Today I picked myself up, brushed myself off and will continue to keep fighting for Lizzy as hard as I can.

My plea for help!!

A special needs child with Spinal Muscular Atrophy has an metabolism disorder and needs Donor breast milk to remain healthy. She is no longer able to get from it from donor breast milk bank due to insurance denial. She has a fatty acid metabolism disorder and needs breast milk so badly.

Moms if you are healthy and have some extra to spare please help us. Help us save her life by helping donate your precious gift of your extra breast milk. If its been in the deep freeze its good for a year. If its been in your regular freezer its 6 months. Please read about her in her web-site. She is truly a miracle child. Please help us help her!!

www.our-sma-angels.com/elizabeth

We believe in miracles!!

What else can happen to us? (Spinal Muscular Atrophy)

We just got a letter from the Donor Breast Milk Bank and they are stopping Elizabeth donor breast milk because Lizzy insurance has not been paying . We had no clue they were not paying. Lizzy's insurance had prior approved Lizzy milk so all this time we thought they were paying. What are we going to do? Lizzy has to have that donor breast milk to thrive and survive. I have tried everything I can on Lizzy nothing works better with her tolerex mixture than donor breast milk. She has so many issues with diet because if her disease. Fatty acid metoblism disorder. I am just a mess right now. Tears are flowing down my face. I dont know what to do. This is one thing I can not fix. I have a wonderful lady that is sending a box of her breast milk but I have no clue on how much. Then, when that is gone then what? She is so great to help us but what after its all gone. Lizzy gets 16 ounces of breast milk a day and 20 ounces of breast milk a day when she is sick.
I am just sick.

Paul goes back to work today after his teeth being all pulled. I got the court documents online. The union and his job is ending March 4. No more extentions. We have come to the lasts days.

Lizzy on the other hand is doing great. She is bouncing back. Still not all cleared up yet but ornery as heck and ready to rock and roll. She has been talking about going to Kentucky to see all her friends constantly at CCK. Wonderful place for special need kids.

You ever feel like you have just ran out of all options? Ever feel totally helpless? Every feel like you dont know how you can continue to keep fighting? You ever just get so tired and need a rest and are not able to do that? You know you have to but dont know if you can? Its not like me to give up but..... Lizzy is such a wonderful child and what am I to do this time?

We do believe in miracles and right now we need a few God if you are listening.
www.our-sma-angels.com/elizabeth

On the road to recovery (Spinal Muscular Atrophy)

Above picture is my very pregnant daughter Dawn who just turned 30 the 14th. She is due any day her doctor has said the last few visits. Her baby's cord blood may some day help improve Lizzy's quality of life. She is saving her baby's cord blood for Lizzy. Christen, Lizzy and Dawn are all the same blood type. Could you imagine any greater gift to give? All my girls love Lizzy so much.

Thank you all for your prayers for Lizzy !! They are working!!

Lizzy is doing so much better. She still is not over her illness but is improving every day. You know she is feeling better as she is fighting me on extra treatments now. I still have not let her in her power chair but maybe tomorrow. Christen has actually been reading to her and that has helped so much. She had me very worried this time. I was so scared it was RSV.

Paul is feeling great but driving me crazy being home all week. He is a "TV Station Flipper" (my pet peeve) and always wants something right when I have three things going on at once. I am just glad he is not sick like last week with his mouth infection. All teeth are gone and he says he has not felt this great in 10 years. I have not hardly talked on the phone or been on the computer much at all this week.

The trip to Stanford is getting closer and closer. The auction for my husband's work place is closer and closer...... What will March bring to our lives? hmmm?

Ever feel like you are so stressed out you when you go to bed you can not shut your brain off because you have so much going on you are still thinking about what you have to do in three hours? That's me. Thinking always.... about Paul's Job, trip to Stanford, paying bills, sick friends and Lizzy. Thinking where will we be next year? I do not sleep much anymore. I am getting older and its getting worse. I see the wear on my face with the added wrinkles this year. Lizzy is worth every second of worry and every wrinkle she gives me. Her strength and how she thinks is amazing. It seems I know what she needs when she needs it . She also will tell me what she needs. Its seems I have learned so much in the past 5 years. I have phone calls all the time from people I have met and Lizzy has inspired. We do not give up and some people admire our determination to keep doing what we do. I just wish I had a way to fly all over and teach all these parents everything I know.

A few short years ago we would only look at each day and now we can look at the future. Lizzy's docs, NIV Respiratory protocol, the trial drug(HD), Amino Acid diet with donor breast milk, the oral albuterol, the stretching , the swim therapy, the speech therapy, the not giving up and the power of prayer all have gotten us this far. Plus, the many wonderful people we have met dealing also with SMA in some way or another.



You run in to people who just do not get it and are non believers. All we can do is pray for them. The AA diet works and everything we do is working.

I need to figure out how to convince the newly diagnosed families that we are not crazy in what we do and the hope and the determination we have.

Many Prayers for MJ,Jake,Ally,Sydney Lizzy and all the sick kids.

We do believe in miracles!!

www.our-sma-angels.com/elizabeth

Elizabeth sick prayers needed (Spinal Muscular Atrophy)

Lizzy is doing a bit better tonight. I have her on q-3 . Still pretty sick. I have not seen her this bad in awhile. Not sure why she is so sick. We are germ freaks and Lizzy does not go out with out a mask in the winter. No one sick has been here and we are so careful when we go out. I was a bit in panic mode this morning. No sleep in two nights so I get a bit rough around the edges
We will be okay though. We need all the prayers we can get!!

I am packing things for Madison,WI just in case.

She was just put on an antibiotic yesterday so hopefully tomorrow we will see big improvements!!

Send some of your extra prayers our way!!

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

A better week for a change (Spinal Muscular Atrophy)

Well, its cold here with snow again. Mother Nature teased us last week with nice weather for few days.

Lizzy is doing great. She had a busy week. Monday she went to Hog Chapter meeting in Peoria for the MDA to introduce herself . Tuesday, she saw Tony Plattner to get her TLSO and AFOs made and he is going to help figure out how to help her contractures. on her elbows. Yes, she picked leopard again. Wednesday she has swim therapy (With Monica) and did totally awesome. She was swimming on her belly and just doing so great. She seems to keep getting stronger and stronger !! Thursday she had speech (with Allison) and did so great at a language assessment test and shocked me she is so smart. OMG!! We are going to ISU soon to assess Lizzy on communication devices/ computer tech thanks to Allison.

Papa got the rest of his teeth pulled Friday and says her never felt better. No signs of the infection her had last week. He says he has not felt this good in years. No pain no swelling and he feels great. He used his whole years worth of dental insurance for teeth and over a 1000.00 . It had to be done. He was so sick last week. Hopefully. this will help his sugar levels.

Thank you for all the prayers for us. I pray that after March 2, he has a job and the new owners will accept the current contract. So, far your prayers have helped us because they had postponed the auction and now there is other companies interested in buying Interlake. We still do not know the future.

I am still watching my great niece and its been pretty busy around here.

Today is Dawn's birthday and last Thursday was Jessica's. Next Tuesday is Calib and Rachael's. Its a busy birthday month!! The doctor said Dawn can go at any time so maybe another birthday this month?

We cancelled our appointment with DR.Schroth till March 27. Too much illness up there right now for us to feel comfortable taking Lizzy up there.

Many special Prayers for the sick kids. We hear Sydney C is so very sick, Jacob was reintubated, we hear Courtney Smith is in the hospital in Madison , Ally is Chicago also had RSV and Prayers for all the sick kids. Addy is doing great and ready to come home on Monday.

glimpse of Spring? (Spinal Muscular Atrophy)

The weather the last few days has been a great. Its been in the 50s and 60s and its February for Pete's sake. Is it a sign of Spring? No such luck its supposed to snow on Saturday. It was nice while it lasted!! Lizzy is loving getting outside soaking up that Vitamin D and running around in the mud!!

Lizzy was fitted for her new AFOs and TLSO today at Plattners in Peoria. We love Tony Plattner he is so great with her. She picked out yet again the Leopard design. He using a scan to create the mold for her TLSO and works out great. We were in and out in about an hour. Her foot on her left side is about a -10 since she pushes her foot out of the AFOs on th left and on the right foot she is neutral so that is great!!! Last year before serial casting she was a -23 and a -32. Tony is also going to try to help figure out what to do about her elbows.

Last night we took Lizzy to a HOG Chapter meeting in Peoria at Walter's Bros Harley Davidson for the MDA. She loved it. She talked with the microphone and was a natural. She told them all about herself. She said "My name is Lizzy. I love Hannah Montana, I like Leopard stuff, etc. " They all laughed. She had on a a blue jean skirt (One of many she loves to wear), Black lace shirt, leopard Tights and black boots. She was styling!! She will be going to a lot of the area Hog Chapter to introduce herself and represent the MDA.

We are still watching my great niece and I she kind of like me. She dosent cry for me like she does her Mom and Dad. I just have the touch!! LOL I love babies. She is two months old now.

Papa...... uhhhh what a painful last few weeks for him. He got one tooth pulled on friday and vomited all weekend. He had lost 15 pounds since last WED as of yesterday. I got him to drink unflavored pedilite. Just sip it and he kept it down I made him go to the doc and he got some nausuea med. He is getting the rest of his teeth pulled on friday.

RSV is out there like crazy and we are scared to death Lizzy will be getting it with No RSV shot this year. The state denied us with two LMNS!! So,we are cancelling our Feb visit to DR.Schroth and making it for later in March. We can not take the chance Lizzy getting sick before our CA visit or at all!!

Many Prayers for Sydney, Jacob, Courtney Smith, Addy , Ally and so many more kids in the hospital.

Congrats to Liz, Tim, Turo and Grandma Sallie on the new little baby girl.

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

Never a dull moment

Well, yesterday morning I was woke with startling cry for help from Paul. His mouth was in severe pain and he did not sleep all night. He has this phobia of dentists and refuses to go see one until now. His face was so swelled so bad he looked like Sylvester Stallone in the first "Rocky" Movie. His eyes were swelled shut because his cheeks were so swelled. OMG.... It was bad. He woke Lizzy up by his cries of intense pain and she was throwing a major fit that I was going to take Papa to the ER. So, I said Christen its me or you but he has to go to the ER immediately. Christen said I will go. She took him. It's a man thing to see how much pain they can take. I think they have a class in high school required for boys/young men to have to take that tells them they have to endure pain because they are men. Pain 101. A week ago he said his teeth hurt and I said I will make you an appointment to see the dentist. He huffed, puffed and said I will be okay..... whatever..... So, now he has a 2 abscessed teeth and a gum infection. He goes to the dentist tomorrow. He looks slightly better today but still one cheek is still swelled. He actually went to work like that yesterday. Men!!!!!
If you ask Lizzy about the Stimulus package is she says its something that comes in the mail with flowers all over it. LOL!! We watch a lot of CNN...... She talks about the budget too.
Lizzy got her hair cut today and just loved it.
We fly out to CA March 11 to see DR.Wang, Molly and Andy. Lizzy is looking forward to seeing Andy and Molly. Lizzy loves flying.
Many prayers for Hunter's family. His wake was tonight.
Also prayers Jacob, Emily, Aiden, Shira ,Garrison,Erin,Lauren and all the sick kiddos that are dealing with sickness. Prayers For Addison K also as she is recovering from trach surgery. I hope her she is doing so much better.

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

what a day (spinal muscular Atrophy Type 1)

This morning started out just fine for the first 15 minutes. I got Lizzy up and got her ready for her bath. She was in the tub and I was washing her hair like every morning and I said "We need to hurry up because we have to leave in a few hours." Lizzy asks me "where?" I said "To see Tony at the Plattners to get your NEW TSLO and AFOs. She said "I want to stay home and play my nintendo DS play with my dolls and see papa." I said "Lizzy you get to pick out your new design. Are you going to pick leopard again or what kind are you picking out this time(Hoping to get her excited she is going to get new ones)" well she had a total "melt down" She said "I am not going anywhere I am staying home and flipping herself side to side in the tub. She is not your typical Type 1 child with SMA. Nothing about Lizzy is typical. Christen came in and said "what's going on?" and Lizzy tells her "yes she is going" and Lizzy quit flipping herself side to side( worried she was going to hit her head). Then she flipped on her side again and I saw her DRINK BATH WATER!!!!! I MEAN ACTUALLY GULP IT!! EWWWWWWWW Yuck!! OMG..... she knows better than that. I hurried her out of the tub, suctioned her and coughed her to make sure she has not aspirate any bath water. The little stinker..... I can not believe she did this. She has not done this since she was 3 years old. She knows what happens when she does that. We have to do extra treatments for three days to make sure everything is out and no aspiration Pneumonia. After the intitial drama was over she said" I am okay can I got potty on my potty chair? "I said "Lizzy I need to cough you a few more times". Well, meltdown #2 till I got her in her potty chair. While on her potty chair she said "I told you I didnt want to go any where today and it was an accident I drank the bath water. " Oh my what a morning. So, please pray she does not get sick from this!!

Then, we get a call from Jennifer (Our good friend from N.Carolina)with a little guy

Jacob that is 2 years old has RSV !! Oh my gosh!! What else is going to happen? He is in the hospital and intubated.

Well, more did happen.... Hunter Gerdes a child with cancer we have been watching his web-site and got an update that he had passed. My heart just sank. What a brave little guy. The whole community was involved with his story. My grand-kids Robbie and Rachael went to school in Saunemin,IL with him. Lizzy and I would say prayers for him. Jesus called him home and he earned his wings. Here is the update from his web-site below. Fly High Hunter fly free of disease so many people will remember you for how much you fought and how brave you were.

The update:


"This is with a heavy heart I write this Hunter earned his "wings "at 11:05am. He went very peacefully with everyone surround him. We are very sad Hunter has left us here on earth but we know that he is in a better place and he isnt in pain anymore. Please continue to pray for us and our family. Thank You all so much for everything you have done for our family. There just arent words to express how we feel about each one of you!! "

His picture is above.
http://www.caringbridge.org/visit/huntergerdes


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

Moving right along (Spinal Muscular Atrophy Type 1)

I know watching the super bowl is what most us Americans are supposed to be doing right now. Well, the truth is I do not enjoy watching football and I only watch the commercials and half time while the super bowl is on. Shame on me.... eeeeek ...

In truth I just do not like watching grown men fighting over a ball rolling around in the dirt. I used the pretend to love it that but now with age I have no patience for it.

Well, we are still okay. Paul has been working all he can because not knowing what March will bring with the sale of Interlake. Two other buyers they say are now interested in acquiring Interlake at the auction besides Mecalux from Spain. The Auction is scheduled for the the first week in March now. Reading the court proceedings every day is very interesting. We are praying hard the new buyer will not change anything but it Mecalux buys we already know the out-come. The reduced wages,benefit cuts and basically we will lose our house. So, we need all the prayers we can get to help us keep our house.

Lizzy is doing well. She has been so interested in my great niece we have been watching the last few weeks and is thrilled to be able to see a baby and hold her. I am doing free babysitting so they can get back on their feet. She was born Dec.5.

Last night Elizabeth and I curled her dolls hair and redressed her dolls many many many..... times. She actually has taken a break with her nintendo DS for a few days. She keeps me very busy these days.

My daughter Dawn was told to go on bed rest. She is is not due till March but can go at any day. She is in panic mode because we have a UW visit Feb. 20 and she is so afraid she will go in to labor and I will be in Madison with Lizzy. So.. We have tried to move up our appt a bit on the waiting last for a sooner appt. I want to be here when she goes in labor. She is having a boy. Dawn has yet to disclose his name yet.

I have actually been helping my nephew change his way of thinking and help him figure things out to repair the damage to his marriage. Hopefully, I have given him a guidance on what he needs to do to keep his thinking where it is. Him and his wife decided to stay together and work together to fix it. It takes two to make it work. I have talked to both and I they actually listened to me. Can you actually believe that?? To be 19 and 20 again and know what I know now.... To do it all over again. Wouldnt that be great? My husband and I have been married for 34 years. Lexy is such a sweety I would hate to see her Mom and Dad split up.
I hope this works out but ..... The only problem is they like us and they have been here the past few weeks almost every day. So, today they went to Grandmas to watch the Super Bowl.(With Christen's suggestion) ** sigh** Thank you lord for giving me "a breather" today. No problem watching Lexy but man my nephew has been here while his wife has been working . when he picks his wife up from work they do not want to leave. He will be getting a job shortly. He was laid off his last job and that is where they started having problems. I mean I feel bad for them and I am trying to help them out but I like my privacy you know what I mean?

Our friends little girl Addison with SMA Type 1 is having trach surgery this week. Many prayers for her and her family. I am hoping this will be what Addy needs to help her. Some kids get to a point where they need trachs and sometimes NIV does not always work for them.

Here is some of the President Obama's plans and I so much believe in his words to help us through these rough times to help us get back on track.

President Obamas words on siging three executive orders last week:"So I'm going to be signing three executive orders designed to ensure that federal contracts serve taxpayers efficiently and effectively. One of these orders is going to prevent taxpayer dollars from going to reimburse federal contractors who spend money trying to influence the formation of unions. We will also require that federal contractors inform their employees of their rights under the National Labor Relations Act. Federal labor laws encourage collective bargaining, and employees should know their rights to avoid disruption of federal contracts.

And I'm issuing an order so that qualified employees will be able to keep their jobs even when a contract changes hands. We shouldn't deprive the government of these workers who have so much experience in making government work.

We need to keep our energy focused and our eyes fixed on the real measure of our prosperity -- the success of folks that Joe and I have met across this country who are working hard each and every day. I'm eager to see this task force in action. I'm eager to discuss its findings with Joe Biden. And working with the people in this room, I intend to get this economy on track, to create the jobs of the future, and to make sure that the American people can achieve their dreams not just for themselves but for their children."



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