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.