Lizzy's Page - Living with Spinal Muscular Atrophy

Staying Positive and being Hopeful- Living with Spinal Muscular Atrophy Type 1

2012-01-17T16:57:00.000-08:00

"These pictures are so precious to me .I wanted to SHARE these again . To me these picture represent HOPE,STRENGTH, PERSEVERANCE, BELIEVING IN MIRACLES, BELIEVING IN YOURSELF AND SUPPORT FROM FRIENDS."

Sorry, its been awhile since my last update.
Its was quite busy around here and quite stressful for awhile and I think I should not post if I can not be positive. Things are better now.

Lizzy has been doing pretty well and Paul is healing well.

I had the worst stomach flu hit me since 1979 a week ago. I was sick probably 48 hours and 10 hours I had the runs at both ends. Terrible stuff..... I cured my chocolate cravings because I had eaten a few chocolate truffles before I got sick and needless to say I no longer want chocolate at all. yeah!!ewwwwww

Elizabeth has been getting stronger doing more things and I do not know why. I am so happy. She is lifting her hiney up and moving her head more. She sat in her power chair WITH OUT her neck brace!!Yeah!!! She is such a miracle!! I have not done anything different so not sure why but, maybe its because I am so consistent on her care. I believe with all my heart and soul you can make a difference just being consistent on stretching, resp care, therapies, diet and the power of prayer.

Please also visit my friend Mary's web-site. http://www.aadietinfo.com/ Her daughter and her have been working on this web-site to help clarify the SMA AA diet and the correct way to use the diet and why we do the things we do. I believe using the AA diet enhanced with breast milk is why Lizzy does as well she does.

A lot has happened the last few weeks. Paul was asked to go back to his old job( and we got all excited and we did not say much to many people not wanting jinx ourselves. Thinking our strain of bad luck would change. Well, after a great interview and them saying all they need to do is get home office to approve and a drug test and a physical ( which we were worried about but.... he said he would be able to do his old job) the news is they HAVE NOT CALLED HIM BACK even for the physical and drug test. He has called and they have not returned his phone calls. Grrrr I pray about this among many other things. Something needs to happen quick!! He was denied social security last week. Got the letter in the mail. Now what? I need to stay focused and positive but its getting harder and harder but, when I see Lizzy's face all focus on being positive comes right back.
Hopefully, this year things will turn around for our family.

Prayers to all the kids that are sick. Healing prayers to the Gaynor family to get well!!

Keep Lizzy in your prayers.

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

Families !! Please!! if you have a child with SMA please visit your local fire dept and ambulance services. You need to introduce them to your child you and write daily resp protocol for healthy times and acute illness times. Let them know who you are and all about how your care for your child with SMA . You need all this in place in case of an emergency situation and need their services. Make a scan disc of all vital info and carry it with you at all times and update it. Get acquainted with you community . No matter how old your child is 6months to adult you NEED to do this.!! You can NOT always do this at home. I also suggest having supplemental O2 at home. Please listen to me. This info can save your child's life. You can NOT always "just do it at home". Invite them to your home if your can not get out to meet with them

The End of a Very Eventful Year- Living with Spinal Muscular Atrophy

2011-12-30T19:08:00.000-08:00

Sitting here thinking about this past year I sigh and think "We got through so many situations this past year and we are still here!" RSV, illnesses, Unemployment, not knowing how we would get through the month, Paul's accident, living situations changed, putting my mother in the nursing home, loss of so many close friends and the list goes on and on. Taking a deep breath I think "With out our close friends and family we would of not of gotten here". The power of prayer is a magnificent thing. You can feel all around you that people are praying for you . I would close my eyes at times thinking "How are we going to get through this? " and then, I could feel the prayers surrounding me and it was like we were led through a storm to a safe place. Thank you all that prayed for us and those that helped us out. I am forever in debt to your kindness.

My Mom is very good these days. First time since I can remember Mom's Christmas cards that did not have so much mumbo jumbo written on it that did not make sense. She is getting the mental and Physical help she needs and that itself was my best gift this year.

Paul the wonderful guy he is took my healthy grand kids out to see my mom for her Christmas party. The kids had a blast and mom was so tickled to surrounded her great grand kids. Lizzy was home sick with Christen and I both. The very next morning I hear groans and some scary sounds coming from the upstairs bathroom. Paul was vomiting and had severe diarrhea. Being an insulin dependent diabetic he had me worried. Granted I had no sleep the night before because of doing treatments on Lizzy around the clock. Christen help me tag team Lizzy and slept on my floor in my room to help with Lizzy. Lizzy was on supplemental O2 for two days. She ran high fevers and then it settled in her chest. So, here I am taking care of Paul too. Disinfecting every time we went in the bathroom besides every inch of the house!! I would hear him down stairs and I would run down stairs and clean that bathroom too!!! I was a "Freak!! OH my goodness!!
Lizzy and I have not left the house in two weeks. No family gatherings for Christmas Eve and Christmas day. We were home and safe. Lizzy had a great Christmas even though she was sick.
Lizzy was still having problems yesterday.She had thick mucus in her I could not get out. I tried to figure out what was going on and her sinus passage was blocked. So, today I used MFR therapy on her some neb meds her and got the blockage out. She has been so much better today.
Below are pics of her at the Rotary Club's Christmas party a few weeks ago. I will have more pics of her later.

My brother in law was in a coma for two days and the doctors said "They did not think he would survive." Well, I am here to tell you that after we requested prayers from family and friends and he came out of the coma today spitting and sputtering!! Divine intervention!! The power of prayer and positive words. Believe in miracles because they work!! Thank goodness my brother Rory and his family are there with Rita .
Sending healing prayers to MJ also. She has been sick for a long time. MJ get better!! Sending healing prayers to Sophia Gaynor too!!

Thank you all that are in our lives and Thank you for your continued prayers!!

2012 will be a great year. I feel it!!

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

Just a quick update- Living with SMA

2011-12-21T13:07:00.000-08:00

Wrote this a week ago and I guess I did not finish!! I will update again soon!! Its been a better week!

As, Christmas approachesI have been going through some thing lately that seem to be making a huge impact on my emotions. A death of a son of a couple that were our very best friends over 25 years ago three weeks ago. Then, his father....... our old friend died a week ago tomorrow last week. Did the son tap his Dad on the shoulder and tell him it was time to go? Imagine what that family has been going through the past few weeks. Losing a sibling and a son then, to lose their father and X husband. I could not imagine. Lizzy and I have said prayers for them. It hurts me to know they are all going through such a difficult time
It was like we had gone back to a different time seeing many old friends and acquaintances . We are all old!! Where has these friendships gone ? How was it back over 25 years ago we could not seem to live with out each other and then we do not even know each other now? I still have many feelings embedded in my heart for some of these people but how can we lose touch like we have? I did not even know I missed my old friends until I saw them again. My life took huge changes again when Lizzy was diagnosed. My old friends have no clue as what my life is these days. They have no idea what it is to fight so hard to save a grandchild that your care for that was diagnosed with SMA. They have no idea how I try to help as many families as I can with what I have learned from caring for Elizabeth. This past week wore heavy on my emotions besides my heart.
Lizzy had the Rotary club Christmas Party on Tuesday. She loved it. Its a great thing they do for special needs kids.
Lizzy had swim therapy today and worked so hard today. I was so proud of her. She said ,when we got there that "She could not wait to get in that pool!" I knew she like swimming but now I know she loves it.
Lizzy is our miracle. She is so special and is so happy all the time. I am content with that.

Special prayers to our sick friends!! Asking a few for me too. My headaches continue. I have had them since the car accident. I need to get to a chiropractor but when? I have no time to do anything for myself lately.

Have a fantastic holiday season!!
"We believe in miracles because we live with one!!"

Christmas is sneaking up on us - Living with Spinal Muscular Atrophy

2011-12-04T15:06:00.000-08:00

Its been an interesting December so far.
Lizzy had a bad ear infection and then , she started having some plugs. Got her on an antibiotic and she seems much better. Her fever caused her heart rate to jump to 173!!! She is still on extra treatments and experiencing some plugging. UGH..... I love the season just not the illnesses that accompany it. Then, we get out our Christmas tree that has 700 pre-lit lights on it and half the lights are not working. I know we have had this tree for 6 years but... geessh come on now!! So, since funds are tight Christen and I had to take ALL the lights off the tree. That was a very tedious job!! A pain in the hiney!! We had wanted to get some lights at Wal-Mart or K-mart. All the white lights were gone!! First week in December and all the Christmas lights were sold out!! Really? Can you believe it? Sold out!! So ,after all the work taking those lights off it sits in the corner "Light-less" until we are able to get some light. Christen was going to go get some at another store but..... the van is broke down again!! Paul had changed the roaters and brakes yesterday . Then, Christen was taking Rachael and Robby home and they smelled something burning. Smoke came rolling out from where the tire is. She walked in the house screaming "That her van was on fire!!" Paul went running out there. He said " Not sure what is going on but he thinks her brake stuck on." So, they are out there together bleeding the brakes as I write this. " Please pray it works.

Tomorrow, will be our 37th wedding anniversary. I can not believe how fast life goes by . Seems like yesterday, I was sixteen getting butterflies the night before our wedding. Every-one said it would not last. I figure lasting this long in a marriage we can accomplish almost anything!! Its has not always been easy. Last three years have been very challenging.

Lizzy is getting better . My mom is doing better than she has in years!! Christen's neck and jaws are improving. Mine too just not as fast as hers. I am losing weight SLOWLY but losing!

Keep, Hannah Price in your prayers! MJ too!! I have NOT been updated on Stella , Kennedy or Nick so they are still on our healing prayer list!!

Thank you to all my friends for being there for us!!

"We believe in miracles because we live with one!"
Happy Healthy Holiday Season!!

www.our-sma-angels.com/elizabeth

Dawn just sent home some lights. The tree is now decorated!!

Being Thankful- Living with Spinal Muscular Atrophy

2011-11-23T20:00:00.000-08:00

I am thankful for the little miracle that lives with me and changed my life. I am thankful for my family.There are my dear friends that I am grateful for. I am so thankful for them every day of my life.
I am thankful for the many wonderful moms that have donated their gift of their breast milk to keep Lizzy doing well.
I am thankful just being able to care for Lizzy and keep her healthy as possible.

Have a blessed Thanksgiving!!!!!!!

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

Getting that holiday feeling - Living with Spinal Muscular Atrophy

2011-11-15T16:04:00.000-08:00

Lizzy and I have been obsessed with the Hallmark channel since last weekend. We have been watching Christmas movies on there. Already! I think watching them makes me believe in miracles that much more.
We love that warm fuzzy feeling the holidays give you.

Lizzy is on some extra bipap tonight. Not sure if its her teeth or what. Her molars are coming in and are so swelled!! She is NOT sick( I hope any way). She just needed a bipap break.

We had a very eventful day. Lizzy had Speech at the hospital . We were all in the van and was rear ended by another car. Yeah, sitting at a stop sign waiting for traffic to clear and negligence of the driver that hit us to follow traffic safety laws and pay attention, the damage to the van is over$ 1500.00 . Lizzy was laying on the seat snuggly in her EZ on seat belt surrounded by pillows and said she is fine. Christen's and my necks hurt and we both had headaches but took some Motrin and so far we are fine now.Corbyn was unaffected. He was snuggly in his car seat. My head flung forward and Christen's must of also. I guess we will see tomorrow how we feel. Grrrrr I am just so mad at that woman for being so careless. Christen went to our insurance guys office and then had to get an estimate. They are not sure if the frame is sprung or not. The bumper is ready to fall off!! What else is going to happen to us? But....Just like everything else we will get through this.

Paul went and saw the doctor last Tuesday and he recommended he files for disability immediately. He injury from July has disabled him and to add to the news they are pulling his CDL licence( Big truck) because he has not maintained his blood sugars for 3 years. for his diabetes. He had a really bad low sugar a year ago . He was quite devastated by the news but.... we will get this also.

Sometimes, I think I should not post because its not a lot of good news and seems like something is always going on but, I feel if I write about it maybe it will get better. Sometimes you have to forget the bad, appreciate what you have and look forward to what is coming next. I can not give up and I have to keep trying to stay positive. Just look at Lizzy and how happy she is. How can I not stay positive with her around. She still says " She loves her life!"

Good thing is Lizzy is doing well and loving school.
Prayers for our friend Chase he is on the hospital.Also, for our friend Sophia to heal well from her growth rod surgery.

Thank you to my friends for being in our lives!!
Happy( Soon Coming) Holiday Season!!

"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth
Families !! Please!! if you have a child with SMA please visit your local fire dept and ambulance services. You need to introduce them to your child you and write daily resp protocol for healthy times and acute illness times. Let them know who you are and all about how your care for your child with SMA . You need all this in place in case of an emergency situation and need their services. Make a scan disc of all vital info and carry it with you at all times and update it. Get acquainted with you community . No matter how old your child is 6months to adult you NEED to do this.!! You can NOT always do this at home. I also suggest having supplemental O2 at home. Please listen to me. This info can save your child's life. You can NOT always "just do it at home". Invite them to your home if your can not get out to meet with them

Some Great News for Lizzy and we are just trying to get by- Living with Spinal Muscular Atrophy

2011-11-05T22:39:00.000-07:00

Its been a crazy last few weeks. Besides, 3:30am phone calls from my mother complaining about her nurse's aids, appointments for Lizzy and Paul was FINALLY released from the doctor and trying hard to get a job. So, I am home alone with Lizzy a lot and trying to even get a shower is huge chore. Sigh..... Got to love her.She keeps me hopping and focused.
As, of Dec 2nd she will be in swim therapy every other Friday with PT and OT will do land on the other Friday. So, once a week she gets PT, OT , speech and as of now Myofasical release. These things she has needed . I do what I can with Myofasical release and stretch her every day but since she quit swim therapy I have noticed that she will NOT sit in her power chair like she was. She seems stronger some days and others what little muscle she has seems tight. I guess you can say she is "High Maintenance" LOL She is worth every minute of every day I spend with her. She is too funny. They other day I asked her " if she needed her nose cleaned out and she said Yeah " I think there is a Bear up there!" I laughed and said, " Oh really!!" I cleaned it out and then she said "There was bear up there that ate a rabbit and then the bear pooped all over" Where did that come from!! She has such a cute personality. Ewwwwww Gross! So funny!! She looks forward to her teacher Becky when she comes that she watches out the door until she sees her walk of the ramp. I have been hearing her tell stories to her and just laugh. She is something! She is still shy when she meets somebody new. Then,once she learns to trust you she until you get to know her she talks and talks and talks!! She makes life with living. She makes dealing with the stress and hurdles I have to jump daily a lot easier to get through.

Not sure of the future for the four of us Paul, Christen , Elizabeth and I in this terrible situation we are in financially but I know I have to take care of this family. Might have to sell our house, I might have to take on a part time night job but I know I have done everything to keep what we have. I have learned to live with in our means but recently its looking really scary. The savings that we have struggled to keep is gone.The bills have been maintained until this month. Its been extremely hard since July. Next month looks bleak, but.... I believe God will get us through this. My friends are the best ever I have had and they have some powerful prayers. I think the Christmas season will be the worst ever to get through but.... we will no matter what sacrifices we have to make but we will get through it!!

I need to be making Christmas bows and selling them because Lizzy's account has been used for her Myofasical and some medical supplies that her insurance does not pay for has been dwindling down too.I guess the Roller Derby Girls heard about Lizzy and offered to help with a benefit. Is that not cool or what? Lets hope it follows through!!
Paul figured out what was wrong with van and it running again!! YEY!!It was a broken spark plug!!After all the "Drama" that caused besides the money that was paid to fix it. Oh my... Its BEEN A crazy last few weeks.LOL I can chuckle now.

Prayers for Sophia D, Nick ,Emma, Jerika, Stella and MJ for fast recovery. Keep us in your prayers to stay healthy and to be able to get through the fall and winter.
Thank you to all of you that are in our lives. Love you all
I know I am repeating myself here but:
Families !! Please!! if you have a child with SMA please visit your local fire dept and ambulance services. You need to introduce them to your child you and write daily resp protocol for healthy times and acute illness times. Let them know who you are and all about how your care for your child with SMA . You need all this in place in case of an emergency situation and need their services. Make a scan disc of all vital info and carry it with you at all times and update it. Get acquainted with you community . No matter how old your child is 6months to adult you NEED to do this.!! You can NOT always do this at home. I also suggest having supplemental O2 at home. Please listen to me. This info can save your child's life. You can NOT always "just do it at home". Invite them to your home if your can not get out to meet with them
"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth

Power of love, friends and prayers - Living with Spinal Muscular Atrophy Type 1

2011-10-25T19:15:00.000-07:00

Love this picture of Lizzy!! Its from a few years back.

Lizzy and I have been so worried about a little friend of ours named Stella. She had spinal fusion today. As, far as we can tell everything went well. Oh my gosh what a relief. Thank you God for getting her through this. When I read the words that "She is done and they are waiting to see her" What a ....... Relief !" Lizzy and I both took a deep breath at the same time when we heard that. We love you Stella!! Send healing prayers Stella's way!

Here is a picture of her with Lizzy this past August. Lizzy kept running up and down the hall waiting for her when we were at Madison. http://www.caringbridge.org/visit/stellaturnbullturnbull

I was getting very depressed thinking about our situation and still nothing has changed much. Paul has applications in all over and we" KEEP "hoping for a break here of that call asking Paul to come in for an interview. He had a job the week after his accident in July and could not go because of his injuries and he had to have surgery. I have not been able to even go look for a job because the van is not working. Christen is getting back and forth to watch Corbyn with Dawn's car but, that can not go on forever. I can not keep thinking about these things constantly. I have to just think about doing what I am able to do and not try to fix everything. I always try to fix everything and there has been times where I have figured things out but have to realize I am only human.
I got Lizzy's blood test back this week( from August visit at Madison) and I was excited that even though she was slightly low in (2) aminos her blood test was great. Her PH balance was where it should be. Her vit D levels and carnitine were perfect . It was over all a great blood test and I upped her branch chain a bit more because she growing. Looking over the pages I was excited. I felt pretty good about how I do her diet and how I make sure she gets what she needs. She was off her feeding for longer than normal because we were waiting to get her blood work done so that itself maybe me feel even better. The miracle of human breast milk. That is one thing that I know has helped her so much besides the Tolerex and her supplements!! She will be on donor milk forever!
I had to realize I am doing every thing I can do and only what I am capable of doing. I have learned to love unconditionally no matter what. Lizzy taught me that. Love is a powerful force as is Divine intervention. Lizzy and I say our prayers and know God is watching over us. I believe in miracles and I believe in the power of prayers. I felt so many prayers when Lizzy was in the hospital earlier this year. Its like could hear all the friends praying for her when she had RSV.
Lizzy just got a stander from another family that works so much better for her. It came from Sydney a little girl Lizzy's age that earned her wings. Lizzy's stander is being donated to the school as their funding has also been cut and many kids can benefit from using hers.
I am going to concentrate on Lizzy, making my hair bows and continue to pray. I am tired at thinking as myself , as a "Pity Party" Its ridiculous to feel this way. Life is too short !!
I have a quote I found from Tiny Buddha:
"I believe that the universe always provides us with clues, helpers, prompts, kicks in the butts, hints at solutions to problems—whatever we need to accomplish what we need to accomplish, or to learn something, or to move forward in some way, and so on. All we need to do is be open to hearing/seeing/receiving those messages."

Families !! Please!! if you have a child with SMA please visit your local fire dept and ambulance services. You need to introduce them to your child you and write daily resp protocol for healthy times and acute illness times. Let them know who you are and all about how your care for your child with SMA . You need all this in place in case of an emergency situation and need their services. Make a scan disc of all vital info and carry it with you at all times and update it. Get acquainted with you community . No matter how old your child is 6months to adult you NEED to do this.!! You can NOT always do this at home. I also suggest having supplemental O2 at home. Please listen to me. This info can save your child's life. You can NOT always "just do it at home". Invite them to your home if your can not get out to meet with them

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

"When do we get a break? "Living with Spinal Muscular Atrophy Type 1

2011-10-22T19:59:00.000-07:00

Its been a heck of a year. Thank goodness its about over. I have enough troubles this year to last many years.
Now, to add to our situation the van in having issues again. I can not pay to have it fixed. It will just have to sit. Things not be any worse right now. We do not know what the months ahead will bring.
Paul is not doing so hot but is looking for a job. The future looks very bleak. When do we get a break? Winter is coming and we do not know how we are going to make it. Sell our house and make nothing off of it even if it does sell? Then ,where do we go? What will happen to us?
I try to stay positive but with realizing I will now have to quit being Lizzy's caregiver and get a job is tearing me up inside. Christen has tried and can not get one locally and Paul's health is not good right now
I pray every night and Thank God he has gotten us through ......I do not want to give up but what is next?
Lizzy is doing well and that is the only positive thing we have. She is the only thing that keeps me going.
Please, pray something good happens soon for us. We need a miracle!!
"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth

Losing a friend, Birthday and Prayers- Living with Spinal Muscular Atrophy

2011-10-12T16:10:00.000-07:00

Losing a child is the worst most horrible things in the whole world to me for any parent. Then, to know a child, that you loved in your heart and prayed for every night then...... they just die... really effects you emotionally besides physically. We have lost many children in to SMA. I hate this disease its steals the lives of children. Sweet innocent children. We lost a good friend's child last week. I, seriously got weak in the knees and physically ill when I found out she had earned her angel wings. Her parents are some of my heros for their fight to save their daughter and to help children affected with the same disease as Lizzy. They helped fund Stanford trial that Lizzy was apart of. We have been on this road together since the beginning. Just talked to her Mom right before she passed. We were planning on getting Lizzy and her getting on Skype together. The child's name Aleena Hope Miller. Beautiful Aleena left this earth October 6th. I am honored to have met her. http://www.aleenahope.com/
http://brookhaven.patch.com/articles/aleena-miller-7-dies-bravely-fought-severe-genetic-disorder
My heart is just broken. I need to celebrate her life not dwell on her passing. She was a true miracle child that through her parents and all that met her inspired so many. Thank you , sweet Aleena for being in our lives even from afar. Lizzy had you in our prayers every night. Please, watch over your Mommy and Daddy. Send them signs from heaven that you are at peace.
(Okay, I am wiping the tears away for like the 100th time since last Friday) still hurts.

I am missing going to California these days. It was a needed break every time we went. We have not been there in over a year and since DR.Wang is no longer at Stanford . We do not go out there anymore. I miss the people, the weather and the welcomed break!! How I long to go back there!! Not in our future though or going too far from home. Lizzy has gown and we need a bigger van for all her things she has to have and for her to travel comfortably. Our van has too many miles and too much needs fixed to be safe for a long trip. Maybe ,when things get better with the economy and Paul is able to work. we can get one. He is healing but still in a lot of pain.

Lizzy had a wonderful party on October 1st. Every year we try to make her birthday special.

Her cake was all eatable!!
Elizabeth is doing pretty well. The occasional sinus infection but other than that she is fine. Growing so much. She needs a new TLSO, some adjustments on her power chair because of recent growth spurt. She is doing well with school work with her tutor. Can you believe it she is eight years old?? She got some surprise gifts in the mail!! Thank you!!

My daughter Dawn had surgery today on her back to remove a nodule. She went through getting her thyroid on both sides taken out a few years back because they found cancer. Now, a few months ago a new nodule appeared on her back. They say its not cancerous but sent the nodule off to be tested. Please send healing prayers her way.
Send prayers to Sophia D whom has not been feeling well and add MJ too, as she is in the hospital.

Thank you to all that are in our life."A faithful friend is the medicine of life."

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

Count down to the big Birthday- Living with Spinal Muscular Atrophy Type 1

2011-09-27T21:03:00.000-07:00

The sky has been gray last few days. Its been cooler at night. The leaves are turning to a brilliant gold color. Fall..... is upon us. It used to be my favorite time of year. Sweat shirt weather. Now, sadly thinking to myself it means the Flu season is upon us.
Lizzy has been pretty well all summer. She had a sinus infection last week and last few days she has been really tired. I pray she is not getting sick.
Sept.26
Spoke too soon my sweet girl is not feeling well at all. She has been on bipap since Thursday night. Her teeth are so swollen where her permanent teeth are coming in. No fever just pain. My poor sweet girl. It hurts me to see her like this. These are her permanent teeth. I have never remember this happening to my kids. I just feel like I could throw up I am so upset about her not feeling well. Its not her lungs but she thinks bipap makes her feel better.
Sept. 27
I have not had time to finish my updates. Lizzy is doing a lot better today! Thank the dear lord.
She will be eight years old on Thursday!! Eight years . Our princess will be eight years old.
Its been a learning experience,Lifes values have changed for me and I feel closer to divine interventions and at times feel I am being guided be divine intervention to make the right choices when it comes to Lizzy.
Its like all that important anymore is keeping Lizzy healthy, do everything I can to help their families, my family and those friends that I am close to. I used to be so more involved in other things in my life. I value things much more. I am a crazy recycler. I even recycle old buttons and make hair barrettes besides on my bows. Its like I want some of the past remembered in my future.

Thank you that all help us get where we are and helped us with get Lizzy to this huge milestone. The Big #8 birthday.
Keep Lizzy in your prayers!!

"We believe in miracles because we live with one!!

www.our-sma-angels.com/elizabeth

Where does time go and remembering - Living with Spinal Muscular Atrophy

2011-09-18T14:44:00.000-07:00

9-12-2011

Good grief its almost the middle of September. Where has the time gone?

I think this summer was the hottest more stressful summer I ever been through... EVER!! Now, its early fall and things have calmed down a bit but the summer has escaped from us very quickly. Lizzy was not out side a whole lot because it was so darn hot. My kitchen air conditioner died. Not, a good thing in this hot weather . I welcomed a few cool days but, unfortunately its back up to the high 80s here.When its hot I have a hard time too!!

My sister Rita was home for the first time in 5 years. It was so very great to see her ! I got to share some of my stress with her. She looks great. Me..... I have gained so much weight its pathetic. I have no time to exercise but I have been thinking while Lizzy's teacher is here I might start a exercise routine when she comes twice a week. I need SELF DISCIPLINE!! Lizzy has a routine and I do now NEED one too, for me!! I have a bad habit of not sleeping and eating very late. Bad......... Wish things were better because I would join weight watchers in a heart beat if I could. I would feel so much better if I could lose 20 pounds. I need to badly. Maybe soon I hope.
Lizzy has her first sinus infection of the season. She is doing very well today. I hate it when she is sick. Keep her in your prayers.

Paul is healing well and in therapy. Mom is doing much better and her health is improving. They found a mass in her pancreas which we are waiting the results . I am hoping she is okay. She is FINALLY being medicated for her mental issues. Its going to be great to make she sure she is doing well. Maybe some peace now for all of us!! Love it when good things happening!!

My thoughts were pulled back to 9-11-01 yesterday and basically all week-end. I felt the pain in my heart 10 years ago. I felt at the time I had been personally violated and I know so many felt just like me even though I knew no one that had lost their lives that terrible day. How could one man of caused so much murder and suffering?The biggest mass murder in US history. I felt all those feelings all over but then I also felt some feeling of hope after seeing the memorial site of that tragic day . I felt a peace and a calming when seeing it on TV on Sunday.It felt like a healing to my heart.

Lizzy will be 8 years old on September 29th.. Can you believe it? My goodness. She is such a beautiful ,interesting, fun , intelligent,courageous, charismatic, sociable,talkative, sweet child. I love her so much and for being in my life. She has taught me many of life's lessons. She taught me to live each day . She has picked a tea party birthday theme. She had a tea party at the hospital a few times in Madison when she was there in April and is so much into that kind of thing.. She wants her friends to join her in her birthday tea party. We were suppose to go to Minnesota with our dear friends for Lizzy's birthday but because of health issues of my mother and my dear friend's mother it was a mutual decision to hold off until spring or next summer. It upset Lizzy not to go but she is old enough to understand. why this was not a good time. So, Christen has taken it upon herself to make up for not going to see our friends in Minnesota by having a huge party for her with all Lizzy's girl friends dressed up in their finest attire for her" tea party birthday."

So, much has been going on this summer. Never a dull moment. Last week we had a bad storm and lost internet access for 5 days and Elizabeth was so upset!! Thank goodness it was only the modem to our internet and easily replaced. too bad it was 5 days after I figured out was wrong for the phone company to come by double check what was wrong.
You know we have gotten through these bad times and we are stronger for it. Prayers and good friends have help us get through this. That is why we believe in miracles. Thank you again to my friends for helping us through this tough time in our lives!!
My quote for this past summer and all the out of the norm things that happened.
"All the waters in the ocean could never sink a ship unless its get inside, likewise all the pressure of life can never hurt you, unless you let it in."

"We believe in miracles because we live with one!!"

Fall is almost here and what a LONG Summer- Living with Spinal Muscular Atrophy

2011-08-23T14:24:00.000-07:00

School has started in much of our area. Lizzy will not be starting till after labor day which is fine with us.
Lizzy is excited because she is reading some things and wants to show off to her teacher.

Its been a long exhausting summer to say the least with all that has been going on in our lives.
Paul is healing and starts physical therapy on Thursday this week. Hoping he will be able to get a job soon as he is able.
Mom is finally back to herself mentally and is walking to and from the bathroom. The nursing home that she is in is the Good Samaritan here in Pontiac. They are doing an wonderful job and she has come so far in a little over a month. The nurses and aids are fantastic. I feel so much better she is doing better.
We had a busy last week as we went to UW in Madison twice. One for the SMA Education Day and other for muscle clinic. We were on a panel about traveling with Lizzy. We have traveled all over with Lizzy that is for sure. The ER info was very good.
We met with some great families in Madison. It was two fast trips. Lizzy and I enjoyed it because we GOT OUT!!
Now, the UW Muscle clinic day. It was a great day until the end. Lizzy is stronger than last time. She had the OT awed in watching her. The PT Karen was also excited about Lizzy also. DR. Schroth said Lizzy sounded great. Big difference between the RSV hospital stay and now DR.Schroth said.
The dreaded Xrays on her back and hips. Weeeeeeeell, Lets see how to explain this. Her curve is worse but........ her hips are great . The cons of doing spinal growth rods are a serious concern. Will it help her? Maybe a little,. Will it will stop her progression of her curve? Yes, but it will not change her rib deformity and she will lose turning her head side to side easily and will not be able to go on her exercise ball and stretch. Is her breathing affected? NO not at this time. Christen says,"Not at this time." DR.Schroth did not come back in and talk to us after Christen and the Ortho talked. I am afraid we have upset her. I hope we can make Lizzy's back better like we did her hips. Compared to April when she had RSV she is better but not since last year when she had her curve checked out.
Many prayers to the Lee family . Jocelyn lost her battle with SMA http://www.jocelynpaigelee.org
and another little girl Skyler Jones www.blog.skylarmariejones.com lost her battle with SMA also. We need to find a cure soon!! Too many kids have lost their lives to this devastating disease.

Keep us in your prayers.

Thank you to all of you that are in our lives!!

" We believe in miracles because we live with one!"

www.our-sma-angels.com/elizabeth

Finally, a much needed break - Living with Spinal Muscular Atrophy Type 1

2011-08-05T20:14:00.000-07:00

It has finally cooled off here just a bit.
I just finished helping Paul in the shower. He is doing much better and healing well now.The incision area has shrunk and the hematoma has gone down. He still in some pain but not nearly as bad as before. That man scared the bjeepers out of me. He is a whopping 145 lbs now! The man eats more than me! I need his metabolism. His sister Sharon is skinny like him also. She is not a diabetic though as far as I know.
He is doing much better!This was an extremely bad accident and he is suffering from EXtreme Boredom!

My mom is doing great. Totally back to herself mentally. She was incoherent for about 2-3 weeks I am in charge her medical and I have her off the pain meds totally during the day and only one at night when needed.. I have her on Ensure 2x daily and she is getting really great care. Gives you some peace to know she is so much better just with a few changes. She is getting new dentures and if she has to pay more than her copay my siblings are going to help. Yay!! Life is getting better.

Lizzy has discovered Skype. She was online with Emma and her brother Nick for two hours the other day. Then, Aubrey another SMA friend from Louisiana. It was so cute listening to her. She is so excited.

Lizzy is doing pretty well these days but I still worried about her back and ribs. Seems everything I do is not enough in my opinion. I work on her a few times a day and I have not given up but I do NOT want her to go through a major surgery. She is not complaining at all. We are done with swim therapy and have to come up with more goals we need to achieve to keep her in swim therapy.

We go to Madison on the 12th for a SMA Family Day at Madison on the 13th. Christen is going to speak on traveling. Not me. this time. Then, we come back for two days and back up there again for Lizzy's Muscle clinic. That will be the biggest plan trip we have gone this year so far. Then Lizzy, B-day week in September we will be in Minnesota visiting some close friends! We can not wait!!

Lizzy starts home school in a few weeks. She is so excited!!

How about this good post for a change!!

Thank you that have help us through the tough last few months!! Thank you Shannon and Justin for dinner !!
Thank you Barb M my dear friend for helping me get through the last few months with out you I do not know I would of got through!! Thank you to the Oltman Family! Thank you Molly and Andy for the great Ham!! Thank you all for the prayers!! Thank you for caring!! I will be sending you all thank you cards soon as I get caught up!

August is SMA awareness Month. Please light a candle to honor the kids that have lost their lives fighting Spinal Muscular Atrophy August 13, 2011
Candlelight Memorial Event to Honor SMA Angels, 7:30 p.m. to 9:00 p.m.

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

Hot Hot Hot !! Living with Spinal Muscular Atrophy Type1

2011-07-23T20:16:00.000-07:00

Oh my goodness I do not think its ever been this hot here for this long. Three window air conditioners on and I am still sweating buckets!!
Lizzy is doing great, Paul is healing and my Mom is doing much better!! I have come to the point that I am saying "Whatever!" to almost every new incident in my life. I seems if do not get stressed out over the situation it becomes resolved faster.
Paul's surgery staples are healing well and no redness around the area. That is a good thing considering he has POISON IVY now too!! He is still very sore and very cranky these days too.
Lizzy has been doing the "Whine Voice" when she gets hot and tired and that has been hard on all of us too. Bless her heart, she is a great kid but when she gets that way until she falls asleep her "whiney sound" sends a screeching vibration to you inner ear and the pain is so intense.
My mother is doing so much better this week. She is coherent now and is getting her strength back. I am a head of her medical care now legally and I have them cutting back her pain meds successfully. I have them giving her Ensure in between her meals. She has an appointment on Tuesday with a dentist to get some new bottom teeth. She lost them the first part of the month and that is one the reasons she lost so much weight and was so weak. I made her appt for Tuesday to get a fitting for new ones. She was NOT being taken care of at home the way she should of been. She was being over sedated with no help feeding her. God knows I have a "Full plate" just taking care of Lizzy and Paul but I have managed to care for all three of them. I was with my mom on my birthday, her birthday and yesterday. Lizzy loves going out to see her. There are only 38 residents at the nursing home and Mom actually likes this nursing home much better than the one a block a way from me a lot better and SO do I. I feel much better knowing I have done what is best for her.Rachael, Robby, Lizzy Christen and I went to go see Mom on her birthday.
I am okay. Hopefully, the assistance we have gotten from the hospital will cover Paul's bills for his injuries. The amount exceeds $28,000.00. We were unable to get help through the state as we do not have a minor child or are we over the age 65. I had an interview last Thursday and we did NOT qualify for medical. We can not take the chance to put Lizzy on with us because if and when Paul does get a job and health insurance she could totally lose her coverage. She needs to keep hers. I also inquired for help with Community Action with utilities and there is no funds left to help us with that until November. Chin up!! We will get through this and we will survive.
Some more interesting things have happened to us this week but instead of saying I am" lethal " like I have been its a "What ever....
A thank you to our friends for being there for us when times are rough for others" I another SMA family was stranded on their way back home and it took 10 minutes or so after a face book post and they had help!! Amazing what SMA families can do when we work together!!

My prayers to my cousins Connie, Peggy and Billy for the death of their father and my Uncle Bill http://www.duffyfuneralhome.com/fh/obituaries/obituary.cfm?o_id=1211178&fh_id=10960 . I had lived with Aunt Ginny and Uncle Bill when my mother was ill for several months as a kid and it was one of my best times in my life. I so lucky to have him in my life at such a young age. I loved you so much Uncle Bill as a child and thank you for all you had done for me doing that time. I remember he was an interesting person and my aunt loved him with all her heart until the day she died. God speed Uncle Bill. He would of been 90 today. I was unable to attend the services today.
Thank you all that are in our life.
Prayers to Jacob who is in the hospital in Madison and to Julia who just had surgery and on her way home.
" We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth

Taking a Deep Breath..... - Living with Spinal Muscular Atrophy Type 1

2011-07-13T21:56:00.000-07:00

As, I wrote in my last post husband had a terrible four wheeler accident on the 4th and I have not been online too much. He broke 6 ribs, collar bone, scapula,and fractured pelvic bone. He had surgery today and a plate put in in his shoulder. He is recovering but the doc said yesterday because of all his fractures it will be 9-12 weeks before he will be able to do much after extensive physical therapy.
My positive attitude left me for about 3 days after this last bit of bad karma hit us . I had to realize things happen and I climbed out of that hole that was sucking me down in it. I am back up and realizing how I let my stress consume all my inner thoughts and control me. Never going to happen to me again.
Another, situation has ended up in my life with my mother. She has given up and was placed in another nursing home today. Christen saw her and she said "She has never looked so bad". I shed some tears tonight but only because I am feeling guilty and my heart hurts because I was not able to be with her. I was sick during her last hospitalization . I had sinusitis and allergic bronchial asthma. I was a really sick. No,way I was going to give mom this illness if it was contagious. I wore a mask at home with Lizzy. Then , Paul's accident. I hope I am not the reason she gave up. That will haunt me the rest of my life. My mom has not been easy to live with since I was 7 years old. Lots of mental illnesses. I think that is why I am so strong minded because I did not want to have my family go through the life I went through. She has been having bad pain issues since Christmas. I do not want to lose her but she is in such great pain these days. Will she regain her strength or will she die in the nursing home? I am so torn right now. I take care of Lizzy and have been taking care of my husband its been hard to get my mom the care she needs. Am, I supposed to care for her too? Should I go get her and take her home with me? She can not be just dumped off like a stray cat in the country, I need to pray deep to find the answers I seek. I do not know what to do.
Lizzy is my light she keeps me sane. She is a sweet incredible child.
Our trips for this month are as of now cancelled. That really blows. but..... what can you do? Family has to be taken care of first.
Please keep Paul and my Mom in your prayers.
" We believe in miracles because we live with one!!"
www.our-sma-angels.com/elizabeth

I know God won't give me anything I can't handle. I just wish he didn't trust me so much." Living with Spinal Muscular Atrophy

2011-07-05T22:00:00.000-07:00

I thought the summer was going pretty smooth but seems like things keep happening all the time, Makes me wonder if in my past life if I was really bad or something. I am truly not a "WHINER" !! I know I try to stay as positive as I can but with the situations that keep finding their way to us makes you wonder. As, Mother Teresa put it best "I know God won't give me anything I can't handle. I just wish he didn't trust me so much." Mother Teresa was a wise woman . I have used that quote before because I think about that all the time. I have to endure a lot the past few years. At some point we all face trying times and feel powerless to be able to get back on track again. If you give up and quit trying you will not get back there. I seem to be doubting myself more and more these days. Then, I pick myself brush myself off and continue on. Why I am I like that? I think its because of the life I have had since a child and because Lizzy helps me realize I can not just throw in the towel. I lost my arrogance from earlier years and replaced it humility the older I get . If that makes sense. I take each day as it comes.

Its been a rough year. My husband does seasonal outside work like mowing, cutting trees down, weed eating etc just so, we can get by. Twelve bucks an hour these days is not the best wage in these trying times but it helps pay the bills. My mother has literally emotional drained me. This last weekend was bad with her. She is not well but.. she has went to the extreme recently. I think a lot is she wants the attention. With her recent mental frame of mind it makes it harder every time to deal with her. She has been as bad as a child. Well, worse !! Lizzy is a child and she does not act like my mother. I love my mom but too much is too much . Then, the event that happened this weekend to my husband was something I prepared myself for many years ago expecting it to happen a long time ago NOT NOW. He is a rebel. No doubt why I married him was for the wild life he led. We have been married since Dec 5, 1974.He is 57 !! He has mellowed with age. .... I thought. NOT!! He was out at my daughter's house and he flipped the 4 wheeler. He was taken by ambulance to our local ER and we spent 7 hours there last night. He had been laying across the lake for over an hour and half alone with out anyone hearing him whistling . He finally found his cell phone called one of my girls and they all ran to his side. Leaving me with Lizzy and freaking out on what was going on. He has a broken collar bone, 6 broken ribs and a fractured pelvic bone. He will be fine after weeks of healing. Yesterday,I was concerned for his life . Now today... I am concerned about how to pay the bills next month and the months after. I get paid just a bit over $600 a month. The income tax we have been living on is almost all gone because we have lived on that also. What are we going to do? I am going to try to do his job mowing myself. Lets see. I need to lose some of this carb weight I gained . Might be fun or it might kick my hiney.
I had made home made pulled pork, cole slaw and potato salad for Dawns on the forth where we were at when his accident happened. Since, we were at the hospital my food was all taken home with people!! LOL At least they all liked my cooking. (Trying to add SOME humor to last evening.)

Lizzy was coming down with something Saturday and since we caught it quick "nipped it in the bud sorta speak" she was doing great yesterday. She is pretty tired today because she stayed awake last nightwaiting for me to say prayers and said "She really missed me." Sweet Child. Bless her heart.

Paul is slightly better tonight. He wound on his pelvic bone looked a bit better. I have to clean his wounds. I did it but it took everything I had but I did it !!I dont usually do wound duty!! I get all light headed doing any kind of thing with the skin, blood and bone thingy..... ewww. The docs last night are worried about pneumonia with the 6 broken ribs.. Paul says" This is about as bad as taken care of your Mom" I sad "No, Paul I am supposed to take care of you when you get hurt." This does not bother me. You are my husband. I said "I can take care of you and Lizzy no problem. " WE WILL GET THROUGH THIS!!

The Casey Anthony Verdict shocked the heck out of me. I do not believe it. Are these people crazy to let her back out on the street. Makes no sense to me. Now , they will probably make a movie about her, write a book and she will be a millionaire. Commit a crime , become acquitted and become a millionaire. I see something REALLY wrong with this picture don't you? hmmmm? Just hmmmmmm?

Please add Paul to your healing prayers. Also, add Julia Kay who has Spinal Fusion on Thursday.

One tip: Use : 100% Pure & Natural Ubiquinol as Coq10 supplement. It gets to the blood stream faster and is better for you!! I get the gels and poke it with a lancet and put it in Lizzy's food mixture while making it. I use 50mg Swanson Brand and going to up her very soon.
"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth

Summer so Far- Living with Spinal Muscular Atrophy

2011-06-22T22:41:00.000-07:00

Its been a totally interesting week so far. I caught Lizzy online playing poker today. Yeah, I said poker. Not sure if that is a good thing or a bad thing. I took her off the site and we found another web-site that she liked that was not poker. Too smart for her own good. She has wanted to go outside in her power chair last few days but it has been storming here.
Sunday, Oh, let me tell you about Sunday. We had a cook out and Lizzy's dad was here and Caitlyn. Christen and Brandon went to go get Corbyn at Dawn and Jeff's for the night also. Well, to make a long story short at Dawn's and Jeff's Brandon was upset and flipping disappeared. They live on a lake with 300 acres surrounding them. Brandon was slightly upset over a situation and left the door to the truck open, wallet , key to his room, inhaler and you name it he left it all in the truck. He disappeared for hours. They drove all over in the Polaris looking for him and he was no where. Christen looked for him for 4 hours. Lizzy told me " He did not go any where and he was fine and we needed to go to bed " Lizzy was right.. After hours of Christen,Dawn and Caitlyn freaking out he texted Christen and said he was in the truck driving home. What an ass. How selfish is a person to put others through this? I think he was in the corn field watching everyone freak out there. I was not freaking out. I was to the point I did not really care anymore. I knew he was fine and messing with every one. Needless,to say it was around 4am when we got everyone settled down here and to bed. Again, I say "What an ass!! Thank goodness I do not have to live with the guy!!
Its conference time and we were are not able to attend . Its okay we have a trip next month that will totally make up for it.
Lizzy is enjoying summer on days it doesn't rain!!
"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth

The Amino Acid Diet and Living with SMA - Living with Spinal Muscular Atrophy

2011-06-22T17:10:00.000-07:00

My very good friend Mary wrote this info up to share with families to help them understand the Amino Acid Diet. This is the updated version. Fantastic job Mary!! Thank you for doing this !! So many more babies, children and adults can benefit from this information.

This is only info we are sharing and you should be followed by a diet professional when changing to any diet when you have a child with SMA.

What is the Amino Acid Diet?

By: Mary Bodzo

This information is based on opinions and experiences compiled from parents of children with SMA and should not necessarily be relied upon as an alternative to medical advice from professional healthcare providers.

ABOUT THE DIET

The Amino Acid Diet is a nutritional approach that many SMA families believe has had a positive impact on their child’s quality of life. Using this dietary approach, milk and soy based formulas are eliminated and substituted with a low-fat, elemental free form amino acid formula. Elemental formulas are made from nutrients in their most broken down form, which require very little digestion. Tolerex and Pediatric Vivonex, from Nestle Nutrition, are the two formulas used most often. EO28 Splash, from Nutricia North America, is a ready-made, more palatable, amino acid formula sometimes preferred by children without g-tubes. Because the EO28 Splash contains a higher fat content, it may not be an appropriate formula choice for children with Type 1 SMA. These formulas contain vitamins, minerals, carbohydrates, protein and some fat. The protein is in the form of free amino acids. These amino acids are not derived from food sources. Most parents that implement this diet believe more benefit is realized with these elemental formulas, rather than hydrolyzed amino acid formulas, which contain broken down proteins from foods, such as dairy or soy. The free form amino acids in Pediatric Vivonex, Tolerex, and EO28 Splash, are in balanced amounts, and are less likely to trigger immune responses such as inflammation. They are easily digested and quickly absorbed into the bloodstream. When given frequently, in low amounts, these amino acids provide a steady source of accessible energy and may help prevent muscle breakdown.

Many children with SMA are very reactive to the protein and fat in dairy and soy formulas. Their reactions are often attributed to their SMA progression. However, when this protein and fat are replaced with free form amino acids and appropriately reduced amounts of fat, children with SMA experience improved respiratory health and fewer metabolic complications during illness. Most children with Type 1 SMA have an immediate reduction in airway secretions. Constipation, which can be a major complication, is more manageable or even eliminated. Some children have improvement in strength and regained function.

Parents using these formulas vary their child’s particular diet based on tolerance, age, weight and length, and severity of SMA, but there are some basic guidelines that most children respond to favorably.

Children with SMA do not tolerate large amounts of amino acids or fat due to their reduced muscle mass. This reduction of muscle mass prohibits the proper absorption, storage and utilization of amino acids and fat, which could result in toxic accumulation in the bloodstream.

More than approximately 2 packets of either formula, over a 24 hour period, may cause increased heart rate, arrhythmia, and/or gastrointestinal distress.
% of fat calories should be kept at the minimum requirement necessary for adequate essential fatty acid intake
To avoid fat, protein, and calorie overload, these formulas should never be combined with soy or milk based formulas.
Children should be monitored with the following laboratory testing: quantitative amino acid profile, essential fatty acid profile, complete metabolic profile

ADDITIONAL SUPPLEMENTS

Because these formulas aren’t used to supply complete nutrition in SMA patients, additional calories, vitamins and minerals must be added to the diet to ensure that their daily requirements are met. Special attention should be given to calcium, magnesium, sodium, and potassium intake.

Commonly added supplements include:

Multi-vitamin and mineral– NanoVM from Solacenutrition.com (may only require half-dosage)
Additional Vitamin D3—this level should be monitored for adequate dose
1/8 to1/4 teaspoon salt
Probiotic—Floragen 3
L-glutamine powder—(200-300mg/kg/day, not to exceed 10gm.)

Tolerex contains 1060mg/pack, Pediatric Vivonex contains 774mg/pack, EO28 Splash doesn’t contain L-glutamine

Glutamine lab level should be approx. 500 on quantitative amino acid profile.

Based on lab reports, the amino acids L-carnitine and L-arginine are often supplemented.
Additional essential amino acids should be added as indicated by a quantitative amino acid profile.
CoEnzymeQ10

Although most children seem to tolerate Tolerex best, parents must add LOW amounts of essential fat to this formula. To accomplish this, there are several different options successfully used by parents. Over the last couple of years, it has become increasingly common for parents of children with Type 1 SMA to add breast milk to their children’s Tolerex. For many, this has made a tremendous difference in their children’s growth and wellness, especially their gastrointestinal health. Based on their essential fatty acid profile lab reports, approx. 8-10 oz/day of additional breast milk meets the children’s essential fatty acid requirement. More breast milk is sometimes given when an extremely reactive child cannot tolerate other calorie sources, such as baby foods and juices. If a child’s mother can’t supply breast milk, many families report a positive experience acquiring it from local donors, signed off as healthy by their doctors, or donor milk banks. For more information go to milkshare.com and eats on feets on facebook. There are many SMA caregivers willing to share information on acquiring breast milk from donors. Questions can be posted on SMA family on facebook, SMASpace.com or SMAsupport.com.

If breast milk is not an option, a commonly used fat supplement is 1/4 to1/2 teaspoon of safflower oil added to the Tolerex mixture. Some children also tolerate 1-2 grams of evening primrose oil and/or 1-2 grams of an Omega 3 supplement. Some parents find that a combination of Tolerex and Pediatric Vivonex works well for their child. It can’t be stressed enough that all fat supplements should be added slowly, in very low amounts, to check for tolerance. When used exclusively, Pediatric Vivonex and EO28 Splash should contain ample fat for most children.

Almost all dietary fat is used by muscle. Because SMA patients have very reduced muscle mass they have an extremely low tolerance to dietary fat. When the percentage of calories given as fat exceeds 10%, many children with SMA experience flushing, high heart rate, increased secretions and delayed stomach emptying with reflux and vomiting. Because our children experience improved health and quality of life on a VERY LOW FAT diet, it is necessary to verify that their essential fatty acid requirement is adequately supplied. This should be monitored with an essential fatty acid profile laboratory test.

INSTRUCTIONS ON ADMINISTERING DIET

These formulas should be diluted as much as possible (more than directed) with water and other fluids, such as breast milk, juices, rice milk, almond milk, and fruit and vegetable baby foods. These will also increase calories, potassium, and other nutrients. 16 ounces of fluid for each packet of formula is a well tolerated dilution for most g-tube fed children. Those drinking their AA formula should dilute as much as possible with water and juices. Adequate hydration is extremely important, and recommended daily intakes should be met.

Additional Food:

In addition to the elemental formula mixtures, fruits and vegetables should be consumed. Those with Type 2 or 3 SMA usually tolerate some grains. The formula, fluids, supplements, and fruit and vegetable baby foods should be mixed in a blender and refrigerated. Because children with Type 1 SMA are often extremely reactive to changes in their diet, foods and supplements should be added gradually, one at a time, to check for tolerance.

Children receive the most benefit from this diet by greatly reducing or avoiding animal protein foods. Children following the AA diet correctly are receiving adequate protein from the amino acids in their elemental formula, and can easily be overloaded if they are also eating high-protein foods. Most children tolerate 1gm/kg to 1.5gm/kg of amino acid protein/day. They should never be fed high amounts of amino acids over a short period of time.

CLOSING

Although children are affected by their SMA differently, the recommendations stated earlier have proven to be the safest and most effective way to implement the AA diet. Parents must take responsibility for monitoring and problem solving when placing their child on this diet. Unfortunately, due to the lack of study on nutrition in SMA, many medical professionals are unfamiliar with this dietary approach and often overload our children with fat and/or amino acids. Networking with other SMA families that are successfully using the AA diet and following the above guidelines can be an invaluable source for information on the benefits and proper administration of this diet.

Personally, I have had success with this diet for my daughter Krista, a lovely 21-year old, who was diagnosed with SMA Type 2 when she was 8 months old. We placed Krista on this diet over 16 years ago and have been very pleased with her wellness and stability. There are many other children with SMA that have also experienced more quality and length of life from following the AA diet as stated above. The feedback from their caregivers has played a significant role in our ability to adjust and improve the AA diet. I would like to thank all of you who have contributed by sharing your experiences and knowledge over the last 16 years. It has been a joint effort! A special thank you to Jeanna Huette, who contributed greatly to the revision of this paper.

"We believe in miracles because we live with one!!"

www.our-sma-angels.com/elizabeth

Loving Summer- Living with Spinal Muscular Atrophy

2011-06-09T21:58:00.000-07:00

This is my girl just being herself. She is so full of life!! She is a great kid!! She is my heart.
She has discovered the library. She has been checking out books, to a magic show and tonight Bingo. Tomorrow, at noon a movie and sack lunch . She has to go to EVERYTHING they have. She can drive her chair there and its only 2 blocks away. She hears what is going on and then she is constantly reminds you what time she needs to be there. She has been accompanied by her Mom each time. Which is good that they get this time together. She is loving summer!! She loves being outside even when it has been in the high nineties. Tonight, it was pretty chilly for a change this week.

She is upset we are not going to the conference in Orlando this year but we just do not have the money to go. Paul is still not working and the van is in major need of service. We have to figure something out. I am thinking maybe I might get a job in the evenings and Christen can take care of Lizzy at night. That way I will have all morning and part of the afternoon with her. I am worried about my back and how it effect me to be on my feet to long but I have to think of something. It will all work out I have hope.Its just needs to happen soon!!

Healing Prayers for our friend Hayden in California and Healing prayers or Sophia Gaynor.Healing prayers for MJ.
Prayers for Brynlee's family to find strength to get through the days ahead.

Have a great summer Lizzy is waiting for her big trip next month to see Avery and her friends and then up to see her friend Drew and his great wonderful family. Its going to be a blast seeing all her friends.
"We believe in miracles because we live with one!!"
www.our-sma-angels.com/elizabeth

Too many Angels ..... Living with Spinal Muscular Atrophy

2011-06-07T21:42:00.000-07:00

We lost another child to this terrible disease. Brynlee was a beautiful miracle child that was an inspiration to so many families. She was beautiful child. Her smile would melt your heart. She lost her fight at 2am yesterday.
It was a like a punch in the gut when a good friend called me and told me this little miracle child was now an angel. http://obitsutah.com/obituary/7058/brynlee-belle-liston.htm
This is the worst part of the SMA World is a death of a child. All of us families have a connection and when one family loses a child no matter if they have met personally we all grieve.
Brynlee will be remembered for her strength and how she hard she fought this disease.
They are having a ball to celebrate her beautiful life. Her mom posted this on facebook.

Time	Saturday, June 11 · 1:00pm - 3:00pm

Location	The rose garden at the Chateau 1910 East 10600 South Sandy, UT



More Info	Come one, come all, To Brynlee Belle's Ball! A Princess Ball is being held in memory and celebration of Brynlee Belle Liston. Though her time with us was short, her life was full of love and laughter and we would like to invite you to come share your wonderful memories of her with us. Prince and Princess attire is required. Please RSVP.

Please keep her family in your prayers.
Fly high little princess, fly free of SMA.

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

Illness hits again , Last day of School and Our Next Chapter - Living with Spinal Muscular Atrophy

2011-05-30T19:26:00.000-07:00

Lizzy has had a wonderful last few weeks then with out warning another illness struck her Friday night . She complained of a sore throat . But.... she said " It only hurts just a little." Ugh... Okay, I will give her some Motrin and lets see how she is over night since she told me this at around 10pm on Friday. I watched her most of Friday night emailed DR.Schroth . Then, about 7am Saturday morning she wakes up with higher than normal heart rate from low grade temp and snotty nose. Waves on anxiety over come me. I can say in my mind I was silently FREAKING OUT!! Okay, I need to remain calm for Lizzy's sake . Yeah, like that is going to happen. I had tears running down my face. Oh My... Not again. This can not be happening.... Okay, Lets be calm here. Think positive Jeanna you will get through this like you have gotten through so many illnesses with her. My thoughts were running wild thinking about not been able to take care of her like last time, Is this RSV again? I hear that you can get RSV back again quickly once you get it. My gosh all I could think about was she was getting sicker. She was running a low grade temp, complained of her throat feeling worse and snotty nose. Christen called up to Madison and DR. Greene called back and assured me Lizzy was in good hands with me and he thought possibly it was like a illness he just had that last 4 days and ordered her an antibiotic. Okay, I feel a bit better but I upped her treatments and put her on bipap Saturday morning. She woke up Sunday saying "She did not need bipap anymore . She did not want on it after her morning treatment. She was good all day except for that running nose. Then, around 6pm she was breaking out in that rash she gets when she gets flushed and needs bipap. Her o2 level was dropping to 96-97 O2 . Not bad but... okay this is not bad she just needs a little bipap time I keep thinking to myself, I asked her if she needed her bipap and she said "Yes" . Okay, overacting I was thinking the worst. Oh no, she is getting worse. Put her on bipap . Still doing the extra treatments. Well , at around 5:30 am after I finally got to bed at 3am after doing all her treatments and getting things ready for today Lizzy wakes me up just a talking up at storm. " Nina you awake ? , umm I want to watch TV, ummm can you move my elbow, umm can you move my foot. Nina Nina Nina!!" I reply, " yes Lizzy I am awake now thank you" with out further a do we were up for the day I guess.: She is so much better today thank goodness. The power of prayer again. You can not get better than divine intervention. " Sigh Of relief" the illness is about over, I hope. Thank you for the prayers. Thank you God for taking care of our Lizzy . She was in her power chair today for a few hours and doing pretty well. Why did I freak out so bad. What made me second guess myself . Is this normal? I have to pull it together if not for myself for Lizzy. Where is that self confidence?

Friday, Lizzy was invited to school so she could meet and see the kids and spend a little time at the school. for the last day. The whole school sent her get well cards when she was sick in Madison. They wanted to meet her. She was so excited. Anticipation, consumed her all day Friday, ( Actually since Thursday and she knew she was going) until finally drove her power chair in the classroom with pride. She brought them all cookies. She visited a few other classes too that sent her Get Well cards.

She wants to go to school full-time but because the fact parents do not keep their children home when they are sick we can not take a chance. The illness she has now I am not sure where she got it but its was not from school because she got sick with it that evening.
Lizzy had a great teacher this year that came to the house named Becky. She is a very good tutor and Lizzy responded to her so well. We lost the battle for summer school but I think this fall Lizzy will do very well with Becky again. Lizzy's first grade teacher did very well with videos for Lizzy too. A few science projects. Her first grade case manager (teacher) asked if she could have Lizzy this next fall also for 2nd grade so that is so very exciting.

We stayed home all weekend but that is okay.

Christen went and put flowers on my grandparents , a special friend of my sister's that passed away in a car accident that my sister was in also, a baby's grave name Levi( that died possibly of SMA we will never know that was Lizzy's dad's sister baby an infant and died in his sleep of natural causes), the family head stone and my great grandparents graves Saturday. My grandparents and great grandparents are where we come from so we pay them respect each Memorial Day. I used to plant flowers on all their graves but the cemetery started pulling them up after memorial day. Crazy that they did this because the plants were not in the way of their mowing. Christen and Jessica like putting flowers on the graves too. I missed going this year. Lizzy was sick so Christen offered and I let her do it. I always think about my time when my grandparents were around and the memories they created for me. I feel peace when I am there because these people help make me who I am today. I spent a lot of time with my grandparents because my mom was ill a good part of my adolescence or Mom just could not handle me she says. I took trips with my Grandma Frieda and Grandpa Russell to Missouri for the Cross Country Trail Ride (Horses) and to other places in Missouri. I loved horses and tinkering around with mechanical things as a kid. I loved the farm. My Dad lived right next door so I was on the farm quite a lot growing up more than my two younger siblings. I just got a few goose bumps that ran up my arm !! Thinking to myself what a great life those people gave me when I was with them. I miss them so much !!. My kids and grandkids would of loved them. I know they are all watching over us now. Christen finds she needs to put the flowers on Levi's grave because no one else does. No on puts flowers on the graves we do. I have been doing this for many years. Enough, thinking about that. Grave yards do not scare me .

Every day Lizzy asks when are we going to go visit our friends that live far away. Well, we are not going anywhere until after the middle of July but local appts. No FSMA conference for us this year we are not able to attend this year. That is Lizzy's time to shine. That is shame Lizzy is not able to go this year. Maybe next year. No Stanford trip at all this year since DR.Wang is on sabbatical . I think we will not be going back out there to see him because we recently got a letter from Stanford saying DR. Wang is no longer at Stanford. That is kind of is a good thing because no long trip in a van but a bad thing we will not see the wonderful people like Molly and Andy anymore. They are so much like family to us. We will not see Hayden's family anymore Jennifer and Chris. They are like family too. We will not be staying at the motel we always stayed and visit with the ladies that run it. We will not be at Lucile Packard anymore seeing DR, Wang or the pharmacists. It has been a big part of our life since Lizzy was almost 8 months old. Its hurts my heart but we all must move on with our own lives. These people are all close to us and we will see them no more unless we meet some place else. They are all like family to us. We are moving on to our next chapter in our lives I guess. " Sigh" Miss them all. Lizzy will be getting the trial med in Madison starting in July.
Lizzy is excited about seeing our good friends in Minnesota in July! We can not wait!

Please keep Lizzy in your prayers and our dear friend Sophia Gaynor. Sophia is in the hospital and just recently had a tracheotomy. Here is her Daddy's Blog Post http://www.sophiascure.org/blog/daddy-im-ready

Beautiful loving family and we have known them since before Sophia was diagnosed. Wish they lived closer.

Thank you those of you that are in our life.

" We believe in miracles because we live with one!"

www.our-sma-angels.com/elizabeth

Just living life,Finding Joy and Independence - Living with Spinal Muscular Atrophy Type 1

2011-05-21T18:47:00.000-07:00

Lizzy has been enjoying life and I have been tagging along with her. Watching this new found independence and watching her reactions have me in awe. Who would of thought one little girl can enrich my life so much.

We have had appointments like crazy and afterwards we have been taking Lizzy with her chair to the mall and stores just to look around. She loves it!! She was not in her power chair very long the last few years because of some issues with seating and bracing. She had been to Wal-mart once or twice in her life in her power chair but had needed to come out of her chair due to positioning issues. Now, its a different for her she is in charge of what she sees and where she wants to go while in the mall or a store. Amazing to see her like this. The comments she makes are like she is a teenager. Like , "Gross, or Truthfully, Nina its just not my style or that is babyish looking." Imagine seeing everything from a manual stroller laying flat for over 7 years. Then, you are 7 years old and 8 months old and see a totally different world just sitting up. Its like she has never seen these things before. I love it!!
No matter how much things are going on around me when Lizzy is doing well and things are great I am as happy as I can ever can be. I find so much joy in Lizzy and Corbyn these days. I love the rest of my grandkids deeply but my life is surrounded with these two and their discoveries.

I am so glad we kept pursuing finding a wheel chair vendor that knew how to figure things out for kids like Lizzy. I just wish it would of been a few years sooner. You are used to the vendors you have had for a longtime and want to give them every opportunity to accommodate your needs with their professional expertise. When they do not accomplish that you have to find some one that will. We had this equipment vendor we have now for a very short time before for a kid kart for Lizzy and switched to another because we were told he did not deal with the power chair Lizzy's needed. Yes, he did and does. Live and Learn!! He was great figuring out just what she needed!!

Lizzy is about done with school and she is not likening the fact she will be done for a few months. We could not prove Lizzy was cognitive delayed enough to have her in summer school. She is a pretty smart kid. Its summer so we have a few things planned but until we get the van fixed we will not going too far away. Broken belt in the tire, DVD quit working and a noise in the front Never ending list of things since the van hit 100,000 miles awhile back. Having Lizzy chair in the van also there is no room with all we have to take with us to travel but we will live with it. We can not get a different van because Paul has still not gotten a job but he just completed a college computer course and math fresh up through Job Service so lets hope his newly acquired skills help his chances of getting a job SOON!! We are living with in our means but with no income on his part and just mine the future for us looks petrifying to say the least!! It will work out I have faith.

We have less drama here since Lizzy's dad is not around so much. Christen is treating me a bit better but there are days..... ahhhhhh where we still bump heads. Life's too short to argue... Not good for Lizzy either. Christen needs to learn how to respect me as a mother not as a friend or sister. I am Mom and I deserve respect. As, I said she is getting a bit better.

Since, RSV I am pleased to say Lizzy is better than before. She is doing great in swim therapy. Her back is improving so much . Her strength is amazing. She is filling out and not so tiny anymore as she has been since she was an infant. She is such a beautiful child. She loves life and is exploring her new world of being mobile again.

Thank you to all of you that are in our life that share the same joys as us. Having a child like Lizzy in your life makes you stop, take in a deep breath, enjoy happiness and all life's wonders. We are all connected and to find peace and happiness in our world we have a achieved one of life's greatest gifts. Whatever method you use to define happiness the Dalai Lami says "That happiness is a state of mind more than a reflection of circumstances."
Live life one day at a time is the way I have learned to live.

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

Another Angel Earns her Wings- Living With Spinal Muscular Atrophy

2011-05-10T20:29:00.000-07:00

Its was a sad Mother's day as we found out we lost another child to SMA. We did not know this family in person but knew about them though posts, emails pictures and friends. Wonderful family and Sydney was so full of life. I am beside myself trying to get over this passing as I was torn after we lost Pranav recently. I keep asking myself why does this happen to families that have worked so hard to keep their children alive? This little girl was not much younger than Lizzy. She was a beauty and full of mischief I hear when her and he buddy Charlie would get together. My heart is broken and I have not been able to sleep the last few nights thinking about this. Please keep this family in your prayers.
Here is the write up on her web-site that I borrowed to share.

Sydney Grace Potjer, age 6, our precious gift from God, is now in the arms of Jesus. October 18, 2004 - Sunday, May 8, 2011. Sydney was preceded in death by her grandma, Linda Potjer.

She will be forever missed by her parents, Tim and Kami (Burgess) Potjer; her grandparents, Harold and Norine Burgess, John and Pat Potjer, Ron and Cindy Lemcool; her aunts and uncles, Barry (Jeannie) Burgess, Bonnie (Bob) Rozema, Karynn Sikkema, Bruce (Judy) Burgess, Kristi (Steve) Oostdyk, Karmi (Jim) Middlemiss, Julie (Jim) McLeod, Laura (Jeff) Reminga; her best friend and puppy, Fluffy; her many close cousins, loving relatives and dear friends.

A time for relatives and friends to visit with Sydney’s family will be held from 2 to 4 and 7 to 9 PM Thursday at Cook Funeral Home in Byron Center, 2067 – 84th St. SW. Funeral services will be held 1 PM Friday at the Reformed Church of Corinth, 129 100th St. SE. Rev. Don Porter and Rev. Warren Burgess will officiate. Interment will be at Winchester Cemetery. In honor of Sydney, contributions may be made to Byron Center Christian School or The 200 c/o Sophia’s Cure Foundation, dedicated to finding a cure for Spinal Muscular Atrophy. The family welcomes memories and messages in their guestbook online at
http://cookfamilycares.com/#/obituary/886967.

Fly high sweet little one, fly free of SMA.

What a quarter will actually buy, a special mom, never giving up and hope - Living with Spinal Muscular Atrophy

2011-05-07T19:51:00.000-07:00

Lizzy is doing pretty good. We had another busy week. Lizzy's back is doing much better this week. She loved swim therapy on Thursday. Seeing her in the water again and moving like she does warms my heart. Her new swim goggles need some anti fog on them!! LOL as you can see in the picture above.

We did hit some of the Route 66 garage sales on Friday with Jessica. Spent a few dollars but not a lot. I got Lizzy this beautiful wooden music box for 50 cents that sings "Its a small world" with elves on it( pictured above) . Too cute Looks brand new also. I got Paul some brand new Docker Shorts for 25 cents a pair.I got him 5 pair Yeah, 25 cents a pair brand new. Got a few things and it was nice to get out. Its was a beautiful day.

Lizzy gets her new seating on Monday. Her joystick post was busted last night. The last one we had. Paul was trying to charge the batteries since the chair was completely dead and would not charge. She was just in it so not sure why that happened. He had to take the chair a part. He was not having much luck. I think he needs new glasses he is not seeing too well these days. I think he is letting his eyes go. Time to demand he go to get new glasses.

A few days before Mother's day in 2004 Lizzy was diagnosed. That was seven years ago. What we know know compared to what we knew then is totally amazing. The way I thought, the person I was..... I am a totally different person. The fact was though I was not giving up on Lizzy I would fight to help her with my last dying breath I pledged to myself and her. We were told she would not make it to year old let alone two years old . Well, I am here to tell you my girl is 7years 7 months 8 days old and a beautiful, smart , sensitive, courageous and wonderful little girl. She is my heart and my strength.
Keeping a positive attitude it makes life easier. Never Give up HOPE!!

" With ordinary talent and extraordinary perseverance, all things are attainable. "
Thomas Foxwell Buxton

Happy Mother Day to all you great Moms and Grandmothers out there.

I have been forgetting some of my advice I promised.

Swim therapy for a child with SMA is one of the best therapies for child/adults with SMA. Lizzy goes through Easter Seals.

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

I had to share this again this year.

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
“Armstrong, Beth, son. Patron Saint, Matthew.”
“Forrest, Marjorie, daughter. Patron Saint, Celia.”
“Rutledge, Carrie, twins. Patron Saint…give her Gerard. He’s used to profanity.”
Finally he passes a name to an angel and smiles. “Give her a handicapped child.”
The angel is curious. “Why this one, God? She’s so happy.”
“Exactly,” smiles God. “Could I give a handicapped child a mother who knows no laughter?
That would be cruel.”
“But does she have the patience?” asks the angel.
“I don’t want her to have too much patience, or she’ll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she’ll handle it.”
“I watched her today.
She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I’m going to give her has a world of it’s own.
She has to make it live in her world, and that’s not going to be easy.”
“But Lord, I don’t think she even believes in you.”
God smiles. “No matter, I can fix that. This one is perfect. She has just enough selfishness.”
The angel gasps, “Selfishness? Is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn’t know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see–ignorance, cruelty,
prejudice–and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side.”
“And what about her Patron Saint?” asks the angel, his pen poised in the air. God smiles.
“A mirror will suffice.”

A lot to talk about- Living with Spinal Muscular Atrophy

2011-05-04T15:03:00.000-07:00

So, much has been going on. Sunday Night we heard the news about the man that killed so many world wide was captured and removed from this earth. That took about a 30 minute explanation to Lizzy on how he was not a good person and before she was born he killed many Americans by having his people blow up planes because he did not like America. I explained how President Obama made it just a bit safer for us just with us knowing that this terrible man was gone. I was at the doctors office on 9-11 and watched it on the TV. I felt violated that is the only way I can explain it and DEEP sadness for the families that lost their lives over these terrorists terrible deeds that changed our lives forever.

The Royal wedding was also what Elizabeth and I watched. Friday morning the second time around on TLC. She watched in amazement and asked all sorts of questions there also. It was a wedding to remember and one many can just dream about.

Lizzy's good friend Ben( pictured above) ran a marathon and donated the money in Lizzy's honor to Center for Courageous Kids . How honored we felt. Lizzy's reply when I told her was that of a normal 7 year old. The letters "OMG!" she said and I just love him!!" He is a very special guy Lizzy met as a counselor at CCK a few years ago. I am thinking this was her very first crush. He is becoming a doctor. Lizzy was not able to go to CCK this year because we were not going to able to go and then she was in the hospital when the SMA weekend was. We really missed going.
Lizzy is getting so much better. She is still getting plugs up EVERY day but everyday she is that much more better. I just wish the plugs would stop.

The myfasicial release is working well. Lizzy's ribs are going back slowly. After the hospital stay we were concerned. I am doing it every day as before and we are seeing Linda once a week again to get her back where it needs to be. We understand she will need spinal surgery but her ribs are our concern. Getting her ribs back while she is still flexible is our main goal at this point. Three professional told us that surgery right now not help her ribs and its smarter to get those ribs back before she decide to do the surgery. Those ribs will go back into place it will be much easier for her to sit. If she does surgery now her ribs will not improve only her spine. Its from not proper bracing the last few times. Which is no ones fault. Its just because no one knew here about SMA and to lay her down and then and then sit them up to get a proper correction to her ribs. So, Lizzy's new TLSO is done and we pick it up on Thursday and she gets her NEW Chair seating on Monday!!

I see my mother quite often these days. I think I see her more since she has been in the nursing home.

I have not had much time to be online or to talk on the phone. I am just so busy all the time. Lizzy's appts, daily things here helping Lizzy with home work and I have also been making bows for our beautician to sell at her salon
for Lizzy's medical/need fund. Keeping a constant flow in her account helps with her MF release.

Keep us in our prayers. Paul still can not find a job. Anyone that needs a HVAC tech email me!! He is great worker. He has been mowing lawns and doing some outdoor work to help with bills.
We made it through another month and with help from some of our good friends helping us with the hospital stay. It gives me a warm feeling knowing that we have friends care that much about us.

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

What a difference a day Makes - Living with Spinal Muscular Atrophy Type 1

2011-04-22T12:01:00.000-07:00

Yesterday, was a good day for a change of pace this week. I actually left this house and walked on over to the nursing home. Breathing in the spring air was great. Feeling the grass and dirt soft under my shoes and seeing the flowers popping up all over was like a awakening and rebirth. I love nature.... I love Spring.I needed this walk.
I had the meeting on Mom's care and had my step-father go with me. Dr.Schroth had mentioned to me in Madison when I told her about my mother and the Shingles about Lidocaine patches for her. I talked to her care coordinator and she said she would take care of it on Monday. Well, today they said Mom had been on them and was doing well. The meeting went well and we all have the same goal to focus on Mom's pain as number 1 priority.
I could not handle the colorless room mom was in so I had Christen take her in a different bedspread and comforter to add some personality to the room.You can not heal if you do not have a positive room with color. Mom looked better than I had seen her in years!! She had her hair done by a beauty shop inside the nursing home. I felt so much better since I saw her and talked to her. *Sigh* of relief. I can handle this new responsibility yes , I can! I can do anything!!! She is being well cared for now. Life is good.

I came home with a determination to get Lizzy well. I said" Lizzy enough is enough!!" I told her" we were doing a few extra treatments to get her better and No more fighting me!!" . I said " Lizzy you will get better and we will start now!! No more whining we are getting you better". I did a extra treatment with nebs, IPV and got tons of thick gunk out of her. She was off bipap till 8pm last night and I asked her if she needed to go back on she said" No" but I said "lets take a break and put her back on". She is doing great today. I have a total different out look on things again. I am me again. I do not like feeling the way I was..... self pity...... not worth it. Not me. I was time to forget about those negative forces fighting against us and do what we need to do to .

"We believe in miracles because we live with one!"
Have a great Easter!!
www.our-sma-angels.com/elizabeth

There is something good in Every day- Living with Spinal Muscular Atrophy Type 1

2011-04-20T16:04:00.000-07:00

Lizzy wanted to call the Easter Bunny directly. She said" I NEED to talk to him!" Being 7 and half I am thinking its time to tell her the Easter Bunny is make believe. But.... do I want her to bring her out of believing in magical things? I was younger than her I found out there was NO Easter Bunny. Hmmm what to do?

Lizzy has had her good days and bad days this week. She was off bipap till 10pm last night and today she was on it around 1pm. I feel like I am not doing enough to get her well. Is she going to be weaker or is she just this way until she heals completely? I over think everything in her care right now. Am I doing enough? Am I patient enough? I am not used to her being like this and I feel such a failure these days because she is not totally recovered yet. I asked her what is going on and she said " I NEED my BIPAP NINA."

I try to stay positive but it seems I am having a hard time lately . Its feels like I am chained to my house right now and the walls are closing in. I pray to get me through this tough time but it seems I am not feeling any better after being home. I swear I am not selfish and all I do is want to care for Lizzy. No one is giving me a break here. Its like I have always have been right there for Lizzy but I am feeling emotional these past few days and I do not know how to stop it. Its like I don't want to leave her side but its like I can not breathe. I feel so guilty and helpless feeling this way. I love her so much but her whining and fighting me on treatments is wearing me out. I need some positive energy here. I think there is many factors involved responsible for these feelings. Paul still is not working yet e so I am worried about that. I also have a "Care Plan" tomorrow at the nursing home with my mom's care team. That is also been hard on me. I know they say God never gives you more than you can handle but... geesh I think he trusts me too much these days!

There has been a few things going on with Lizzy's dad that makes me crazy too but I should be used to that. He does things to get me upset daily when he is around. He torments me. Christen ignores it or says Mom Get over it.. But you know I have gotten over it enough and its time I have others back me. I just do not want him around so much. I do better with out him and me in the same room. He is so negative all the time that he sucks the positive energy right out of me and everyone around him. Lizzy does not need that. Sorry, I had to vent.. Yes ,I have forgiven him many times and he always goes back and does the same thing . How can you keep forgiving someone that keeps repeating the wrong that they have done. Yes, I pray for him every night. I usually do not bring him up in posts but I feel so much better venting about it. Its a constant battle with him.

Maybe, I am just plain tired. Maybe, I will get over this "Hump" in my life right now. Maybe, I will just start walking like I used to and clear my brain every night if Spring ever decides to get here. One thing I will NOT do is give up on Lizzy. I know she is struggling right now but she is fighter and she will get through this and be stronger. I know she will.

"Every day there is something good in it" I just need to remember that. I have so many great people in my life I should remember that too. Keep sending those prayers. We need them.

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

Home Never Felt So Good- Living with Spinal Muscular Atrophy Type 1

2011-04-17T21:31:00.000-07:00

Home...... " sigh" Thank goodness.The last few weeks have been like we were in a different dimension or some one else's life. It was our reality but I do not ever want to go through it again. I spent a lot of time praying and crying. I aged so much these past few weeks. My girls all told me "Mom your hair...... its like it turned white, color it!" So, I did today and its purple. Actually, Christen did it for me. I used organic hair color. Yep, its reddish purple. Lizzy said " It looks like a strawberry Nina!" Any way, I might be calling my beautician to fix it! ! Life, is slowly getting back to normal purple hair and all. I have had company come see how Lizzy is doing since we have gotten back. Tomorrow, I will be able to get a bit more caught up around here.

Lizzy is still on bipap more than normal but that is okay. She has been going on it about 4 to 5pm. So, she is off a lot. It just going to take time. She is moving good and is on her computer several hours a day. I notice some nose flaring around 4pm or so and tell her its okay if she needs some bipap time. She tries to push herself to stay off. She has been getting up around 8am and off bipap at that time so she has accomplished a lot in the little time we have been home.

We had some wonderful nurses at American Family Hospital In Madison. We started blubbering like babies when we left. Kim, Claude and Lynn were so good to Lizzy. The RTs were amazing. Working side by side with the RTS was a relief knowing they knew what they were doing. The nurses said" we were so easy because we did every thing ourselves as far as feeds and taking care of Lizzy." Lizzy got really close to Kim one of our nurses. Kim sat with her at her bedside reading books, doing a spa day , the two tea parties and just treating Lizzy so special. Claude also another nurse treated Lizzy so special. We had Lynn at night and she also treated Lizzy so well.

DR.Schroth was like a saint the way she arranged for Lizzy's med flight and handled our ER staff here to have such a quick and easy transfer. DR. Schroth was on vacation and did all this for Lizzy. What a wonderful caring doctor she is. I have already known she is great but this was way" Above and beyond the call of duty" She even had me on the phone two days before Lizzy made a turn for the worse helping me make sure Lizzy was in the best possible hands at home.

Katie Poole has a special place in my heart for meeting Lizzy right off the med flight in the wee hours of the morning. She let Lizzy call us from her phone after she landed while we were on the road. She said " Mommy I am here. Katie is with me and I am okay!" I lost it when Christen repeated what she said to her. Lizzy is loved for sure by many. Our friendship with so many in the SMA community is just breath taking. The cards rolled in, the balloons, gifts, phone calls, two times we had friends bring us supper. We even had a few friends stop up to check on Lizzy. I felt the strength of prayers surrounding Lizzy and also giving me strength to help her get through this. I have been known to be a bit clairvoyant at times but to feel the strength of words the prayers and feeling so many praying for her was undoubtedly the miracle that helped her get her through this bad illness besides her determination to live. Its like I could feel the words of the prayers. I could just go on and on about what wonderful people we have in our life that are in our extended family. Thank you all so much!!

Now, I need to talk to my mom who is a block away at a nursing home and make sure she is doing okay. Its been hard to help her when my focus has been Lizzy. I still kept up what was going on with her and the social workers called me and updated me and my sisters. I am the one that makes Mom's medical decisions now and it the scares the heck out of me I am responsible for Mom's well being too.

Paul is still not working yet but waiting for the call any day to start driving a semi . They are waiting for the contract to come back through and he is in. Its harder than heck getting through this past year but the last few months after his total cut off unemployment has been the worst. Then..... Lizzy's illness. I think I have grown some "nerves of steel" or" brass ball"s because we have gotten through this all and we are okay. Its not been easy with added EXTRA stress ( which I will not go into) besides everything else but I have to say" Yeeeeees we are OKAY!!"
Now my diet starts AGAIN for me. I ate so much while Lizzy was in Madison I was worried they were going to have to "Roll my chunk hiney" through the doors. OMG.... It was unbelievable how much a stress eater I am.
Lizzy amino acid profile came back and it was fantastic. She was a bit high in glutamine but that was it!! The residents had a few others circled on the report but..... they were looking at the wrong values.They were looking at baby less than a month old. Wrong column. So, I must know what I am doing as far as Lizzy's diet. I looked it over a few times and took a deep breath in and was relieved even during a terrible illness she was good.

Thank you again for all the prayers and just everything. Love you all. Thank you for being in my life!!
"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth

Blowing this place!! - Living with Spinal Muscular Atrophy

2011-04-14T12:36:00.000-07:00

We leave for home tomorrow!!! WHOOOOOOO HOOOOOO. Doing the happy dance here!!

Okay , how do you put 30 helium filled balloons in a dodge caravan and get home? Lizzy wanted to take all her balloons home but for safety purposes we are donating the balloons to kids up here after they are sanitized. Can you see us trying to drive with a van full of balloons. Not likely!! LOL

Its been a whirl wind last few weeks. There were many days I did not sleep, argue with the attending docs, piss off the RTS and constantly pray for God to save our girl. I did not know if Lizzy would get through this terrible illness and still be the same kid that came through these doors the night we arrived. The part that hurts my heart is that this little girl had so much confidence in me to get her through this illness with out coming to the hospital. I wish I could of done it but I have to admit if we had not come here and DR.Schroth had not life-flighted her in I do not want to think of the what ifs. I aged 40 years in two weeks. Its been 21 days with RSV and now its finally OVER!! The worst illness ever that we have had to encounter with Lizzy.

The q-2 was treacherous but Lizzy is close to baseline again because of the RTS and their care with me at her side helping. We wanted her intubated but they said no, that it will be rough but she would get through this. they put the tool boxes with the intubation kit in Lizzy's room for peace of mind to us. They said Lizzy did not need to be intubated. They took the boxes out of here last weekend after Lizzy turned the corner.
Lizzy had a tea party with her favorite nurses and PICU DR. Jake ( Lizzy said he is cute LOL) , and it was so much fun for her. They all sat drank tea and Lizzy entertained them. Kim was one of her favorite nurses besides Claude and Lynn. She liked all her nurses but these 3 she liked the best. Just a wonderful staff. She wants to take Kim home and have her sleep in Aunt Jessie's old pink room!!I need a "Kim" to help me at home. She has been so good with Lizzy.

I guess DR.Schroth is saying Lizzy needs growth rod surgery again...... *sigh* but we have to see the new ortho wants to do. We knew this was coming. In the mean time the new seating for her chair is going to be picked up hopefully next week and her new TLSO.

Thank you to all of you that prayed, did some healing, sent positive energy, presents, balloons, brought food , phone calls, being my sounding board, brought supplies, help us with our stay etc and just for being yourselves. You are the greatest extended family ever!!

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

thursday 4/7 /2011 Lizzy update- Living with Spinal Muscular Atrophy

2011-04-07T11:22:00.000-07:00

Update- Thursday

Okay , Lizzy had just a perfect night. Just awesome. She is on Q-3

Then, around 9am started another round of treatments . All of a sudden her O2 levels were dropping ... Then, Christen runs out of the room she was so upset while Deb ( RT) and I were working on Lizzy. Dropping O2s to the 50s, 70s heart rate sky rocking. She had a Huge stringy plugs that was cutting off all her air flow. I mean they were so long . God got me and Deb through this guiding our hands in getting this plug out. Lizzy turned blue 5 times this morning but she NEVER lost consciousness. We did it !! We got it ALL out and Lizzy says she knew we would get it and she was not scared. Can you believe she said she was not scared? ( Tears flowing right this second) It seemed an eternity.

So, now she is sleeping doing well. I had to sit with a blanket over my head to get myself composed and do some direct channeling to that divine source that gets me through each day thank again for the miracle that just happened.

I am going to come out of here stronger minded person than when I arrived.

Thank you for the prayers keep them coming.

"We believe in miracles because we live with one"

www.our-sma-angels.com/elizabeth

Lizzy update 4/6/2011 - Living with Spinal Muscular Atrophy

2011-04-06T13:02:00.000-07:00

Lizzy still can not be lower than 25%. O2 Struggles when she is off O2. DR.Schroth said a few hours ago she is not ready. She also said" we will not be out of here for at least another week". Lizzy has to be off Bipap for 4 hours to go home and well. Which "Sigh" is upsetting but I am not taking her home until she is well. So she is right. I just want to go home you know? This strain of RSV is brutal. I slept for 5 hours off and on and I feel that was a mistake because I feel so tired today. I do better on a few hours sleep. Lizzy will NOT let me leave the room.Which is ok. She needs me right now. She is such a little fighter!!

Lizzy had an okay night.Lower stats and higher heart rate than the yesterday afternoon but she is moving junk out of her trunk. X ray was better I guess yesterday. Her culture only had RSV which is Great no secondary infections.

She has her favorite nurse and RT. LOL Seven years old and requests people by name. Yesterday she said " Hey..... Just where is my doctor? " DR.Schroth was very busy yesterday and did not get a chance to see her. Lizzy barters with the RTS on treatments. " Just one more cough Please then my bipap!" No more suction!! I want IPV NOW!!" She makes everyone laugh and steals their hearts here.

Keep our girl still in your prayers. She is making progress but still pretty sick.

Thank you all for prayers, balloons, gifts , making us food,and just being there for us.

"We believe in miracles because we live with one!!"

www.our-sma-angels.com/elizabeth

Lizzy update -living with Spinal Muscular Atrophy

2011-04-05T19:37:00.000-07:00

The power of prayer and miracles are amazing. Whoa..... unbelievable!!
Thank you all so much.
Lizzy had a good afternoon. She is down right now to 25% o2. I do not want to toot my horn too quick but it seems maybe she is getting better!!
My mom is in Evenglow ( Nursing home a 1/2 block from my house) and is comfortable.
My husband may have found a job! !
KEEP THOSE POSITIVE THOUGHTS AND prayers coming this way!!
"We believe in miracles because we live with one!!"

www.our-sma-angels.com/elizabeth

Two steps forward one step back- Living with Spinal Muscular Atrophy

2011-04-05T10:19:00.000-07:00

Its been like riding on emotional roller coaster this past week.

Lizzy takes two steps forward and 1 step back. Breaks my heart to see what this little girl has gone through but on the other hand makes me beam with pride how she has gotten through it.

Yesterday, everything was going great and I expected this is the road to recovery . Then, she slid back again and bradyed again.

Last night, she was better but getting this junk out is unreal. O2 is still at 30%.

My mother is not well either. They are thinking its bone cancer. She is also in the hospital in our home town,

Its hard not to lose faith through times like this when there is so much going on but faith and believing in miracles is all I have.

Thank you my friends for being there for us.

Keep those prayers coming!!

"We believe in miracles because we live with one!"

www.our-sma-angels.com/elizabeth

Healing- Living with Spinal Muscular Atrophy Type1

2011-04-03T21:34:00.000-07:00

Update- Sunday Evening

Lizzy is doing better again tonight. Had a few tough times this morning. Not going to go into details because I will get upset again but the main thing is that she is doing better now and No o2 drops this evening.Our family was here today and it was quite emotional day but rewarding. I could feel the love we all share for a beautiful miracle child that has changed all our lives with her sweet presence , spunky attitude, her determination to survive all the obstacles she has faced starting with her diagnosis and how she just loves us so dearly. How one child can change so many lives is amazing!

Thank you for the healing prayers, phone calls, balloons, cards, gifts and just caring for our girl and us!!

Thank you my dear friends for being the best friends a person can have in good times and bad.

Draz Family- you made Lizzy wiggle her hands,smile , and pivot her shoulders when she has not hardly moved in a week yesterday afternoon!!. Thank you more than words can express!!(( Hugs))

Keep the healing prayers coming!!

"We believe in miracles because we live with one!!"

www.our-sma-angels.com/elizabeth

The Power of Prayer!!- Living with Spinal Muscular Atrophy

2011-04-02T17:36:00.001-07:00

You all are such special people and so glad to have you in our lives. The prayers worked and divine intervention filled our inner beings and the room.

A few hours ago Bill the RT, Christen and I tagged teamed Lizzy. She said she could not breathe even being on 85% O2. She said her throat was full of junk and so was her nose. her left top lobes were full. Her neck was hurting. I rubbed her neck and then we decided it was time to get her better.

So, we three used IPV, coughs, Bipap mask with O2 flowing and suction. Lizzy barely can talk and directed us what to do. We got so much nasty thick stuff out and a plug in her nose. We worked on her for way over an hour.

She at this moment is satting 99, heart rate is now 112 and she is sleeping. Busted all the junk out we could get!!

She was so relieved. I am so very thankful for all of you and your prayers!!!!!

Thank you all so much!! I hope this is the turning point!! She has been sleeping for an hour!!

Keep those prayers coming because they are working!!

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

please pray for Lizzy - Living with Spinal Muscular Atrophy

2011-04-02T08:18:00.000-07:00

bad morning . Please pray, light candles and have positive thoughts to help our Lizzy. NEED HEAVY DUTY OLD FASHIONED direct prayers to the divine source that answers them. Lizzy has to get through this.
PLEASE Help her!!

Living with Spinal Muscular Atrophy Type 1 - Magic DVDs and Having Hope

2011-03-04T21:27:00.000-08:00

Its been raining here today. Its funny how when the sun shines you feel full of energy (even when its super cold out). Today, rain dark and it was in the 50s and a Blah dark wet day.

Elizabeth and I watched the DVD version of BBCS Life narrated by Oprah Winfrey. Bought the series( used but in great condition). Lizzy loves watching them. Great learning experiences. Lizzy says "These DVDS are magic" Today was a good day to watch them again. Watching Lizzy's face was amazing while she was so captivated by this unique series about species that live in our earth. I just love her so very much!!

Paul has had no call backs on the job interviews. He has called and went back for his own follow ups and NOTHING. This is getting scary. To be cut off unemployment and STILL every week applying for job with no success. The news says "Its getting better in the job market!" He still has not been able get hired . He was talking to one of his people he went to school with and they said" The way the tech school does it is that they only have to get 80% hired jobs with grants " They hope people drop out after mid term because they still get paid. . Paul was on the list NOT to find a job for( From the tech school he attended I guess) from the beginning because of his age!" Is that a bunch of BS or what? They were hoping he would not of had a 4.0 average and drop out. Well, he didnt drop out and had a 4.0 and NEVER missed a day of class. So, what a scam but..... he did learn things he didn't know and needed that schooling to secure himself a job when things open up. There is no PROOF of this to our knowledge but....can you believe he was told that? He showed them huh?

Its been so peaceful here last few weeks with just the four of us. No drama.... just peace. More positive.
Paul is pretty positive he will find work soon. I am just so worried about losing the house but trying to keep positive. The monthly bills are draining our money. I can not wait for spring and of a gas bill and electric bill. If If we could afford it we would go with solar energy. It would cost us a fortune but it would save is so much .
Just paid off all the utilities and house payment. Huge expense. Over 600 for a monthly gas bill? What is up with that? and over 300.00 for electric?? Why are these bills so high? I have Just Energy and locked in my gas bill a few years back. Was it that much colder this last billing cycle than ever before?
I can almost cry sending those checks out but they are paid for another month. "Sigh of relief" Then, soon it will be yearly insurance premiums for car and the van. ugh... It will all work out some way some how. I believe that God watches over us and he will make sure somehow we will survive. We have HOPE and just look what we have accomplished with HOPE.

Its Christen's 28th birthday tomorrow. It did not think any of my kids would be living with us still when they are 28 but you know I guess this is way its suppose to be.

My tip for this post is to use Clorox wipes or Cavi wipes to keep door handles, phones, counter tops, faucets, arms of chairs , tables, toilet seats,etc every day to keep germs away . Not just during flu season but every day. Make sure you wash your hands after you get the mail. If you use suction caths try to get sleeved ones. Cuts down on illnesses . Make sure you wash all equipment including masks after every use. Just some things I do to keep our home safe for Lizzy!

Many prayers for MJ who is in the hospital having a procedure done, for Leah Miller to make a
quick recovery, for our friend Sheila and her family , for us to stay positive and say extra prayers Paul gets a job soon.

Magic is believing in yourself, if you can do that, you can make anything happen."
-Johann Wolfgang von Goethe

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

Meeting The Band Perry and Positive things - Living with Spinal Muscular Atrophy

2011-02-27T18:13:00.000-08:00

Lizzy called her Uncle Calib for the third time this week this morning. " Please Uncle Calib let me meet the band Perry Please Please I love them so much!" Then she says " I love you Uncle Calib!" I know she got to my heart I am sure she got to his too. He does security for celebrities in our area. He was security for The Band Perry. He made no promises but we got a call this afternoon from him and He says "Be here as fast as you can I got you a private meeting with The Band Perry!" Oh my!! I wanted to cry! he hooked her up!!
Lizzy broke out in her red blotches all over. She gets like that when she gets excited or upset. I hurried and got her coat on. I did not have time to change. Getting Lizzy out the door was my main concern. It was her day, it was her dream and her time to shine. I stayed home while her Mom took her quickly to the Crystal Palace. Thank you Kimberly, Neil and Reid Perry for taking time out of your busy schedule to meet our little shining stars Lizzy and Kayleigh. Thank you Calib and The Crystal Palace for giving Lizzy this special gift. Lizzy got to have a special private meeting with The Band Perry( Kimberly, Neil and Reid Perry) and is at the moment still star struck. They are the sweetest people Christen said. Kimberly Perry went and got Lizzy and Kayleigh( Lizzy's friend ) The Band Perry t-shirts . Neil Perry kissed Lizzy on the cheek. Lizzy is still awed. She got to watch the sound check too. Kayleigh got to stay for the concert tonight but because of recent out breaks of Influenza and RSV Lizzy had to come home. She doesn't like being in huge crowds when there is illness like that around. I guess we programed her that way with out even knowing. Lizzy told me" The Band Perry is beautiful!" How is that for a special day in her life? I am sure that today will be a memory she will NEVER forget.
She called me on her Mom's phone after she left and she was actually so" star struck" that she had such excitement in her voice I could feel her aura just glowing even though I could not see her at that moment. I was right when she came in the door her she was glowing.

Paul had a great interview Friday ( the crowd roars!!) He also did testing. Hoping and praying he gets a job soon. This one would be so great!! Its been two years here this coming week that his place of employment closed its doors and was sold to a foreign company. He was not hired back because they busted the union and would not hire back union officers. Paul was UAW health safety, skill trade rep besides working full time in maintenance. Its been a bad last few years but we are getting through it .
Lizzy is doing great!! She has handled being serial casted with the same casts on over a week now. Her teacher has had a cough so we have not seen her this week but that is okay we want you to stay away with even a tickle in your throat.She is coming back on Monday.
Its been quiet here all week with Lizzy's dad not being around,. Lizzy has being extremely good this week not as much whining from being bored. Paul and her have been spending lots of time together.

Some sad news came our way. My niece's boyfriend was killed instantly in a car-motorcycle accident in Florida this past week. Keeping Ariel in our prayers.

We need to add Leah Miller your prayer list. She is pretty sick . Corbyn has been sick too. Christen's friend's Melanie son Lincoln is in the hospital with RSV and pneumonia. Please add them to your prayers.

On a good note thank you to my dear close friend, You are always there for me. Thank you for being in my life. I love you with all my heart.
Thank you to all my friends that are there for us.We are so lucky to have each one of you in our lives.
"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth

Making Lemonade- Living with Spinal Muscular Atrophy

2011-02-19T21:30:00.000-08:00

What is the phrase people say" When life gives you lemons...... oh yeah,.... make lemonade?" Well, things here have been plenty lemony lately and at times seems it will not get any better. I am so very tired. I don't sleep well. I have being trying so hard to keep positive energy flowing here but dealing with some of the issues going on in our lives its getting harder to keep those positive energies flowing. One negative person can suck all that positive energy right out of you.

Lizzy is doing great so its not her.She helps me through times like this. Her and my family.We are a close family. My girls all have good hearts and are so caring.

Seems like dealing with stress as been a part of my life a lot these last few months. My mother's hospital stays and the fact that my husband has not been able to get a job. Today his unemployment was cut off with out notice. He was informed he had gotten another extension( a month ago) 11 weeks and today he received the statement where he did not get paid benefits. He has applied all over every week since he has been out of tech school. He has great phone interviews but they do not call back is just his age? His resume is very good. Makes no sense why he can not get hired. We have kept all our household bills paid since he was laid off some way or another. Lizzy and her mom lives here too with NO HELP from Lizzy's Dad for anything for a very very long time. We have learned to adjust and only buy what we have to have. Now it will be even harder to survive. Now what?

Paul and I made for last years income the same amount I made when I worked full time the last full year I worked over 8 years ago . I was in shock when I looked at our tax info. How scary is that? Thinking back about ten years ago we thought would have a nice nest egg by the time we hit retirement age.My retirement money has been gone for things we had to do when our life changed and when I had to quit my job. There is nothing I or my husband would not do for Lizzy.

Lizzy's new doctor that we had 2 hour consultation with months ago (after our doctor of many years left) was terminated last Friday. There are NO doctors here that believe in NIV protocol and that will help us get what we need at a local level. That was like a kick in the gut. I contacted our old doctor that left and he gave me a few options but....... Lizzy has NO local doctor until March here and that is a maybe. He said" I do not need to worry because I have myself and that doctor in Madison ( he told a friend of mine that)". LOL Hopefully, the doctor he recommended to us here will take Lizzy on as a patient. We need one locally for scripts,blood work and check ups.

Lizzy's suction machine no longer holds a charge and we can not get her a new one. We were cut some of her supplies AGAIN from Medical supply company. Lizzy was finally approved for her new seating for her power chair over a month ago and they are still waiting on some parts to get here .She is being serial casted again because she needs new AFOS after the last time because she pushed herself out of her old ones.

Our gas bill alone for last month was over 600.00!! I am calling Monday and trying to find out why it was so much considering we have Just energy and at a locked in price for gas for two years now. Never ever in our lifetime has it ever been that high. There are other bills I am stressing about also.

We will get through this as we have before. Divine Intervention always seems to help me think more clearly and figure things out. That is what has gotten me through so much these last 7 years.

Some of our friends have helped us out more than they will ever know in our really rough times.

I had a friend that really used to be close to us call me late last week( out of the blue ) and was so negative about doing anything to help these kids . She herself is a parent of a child with SMA but with a different type than Lizzy. As, much as I tried to bring her more positive the harder she tried to be more negative. I realized I was getting no where in trying to help change her thoughts that night and told her I had to hang up before she sucked me up in her black hole of negativity. I laid awake most of that night just trying to figure out what has done this to her. How can these kids do well in these deep dark holes that these parents have created for them. How can they understand what blessing and miracles they are with such a negative home environment?

Lizzy still says " She loves herself!" and I do not want anyone ever to change her thinking. Do we believe there is a cure coming? I believe God gave us what we need to heal others and we just have to find them. I believe that being honest and living a good positive life( positive energy) helps us find the things we need to heal others and ourselves. Healing starts at home. Living life for each day and celebrating life is what its all about. Even in my thoughts and trying to figure out how we can get through this I try to stay so positive. It gets harder and harder but we will make it. Then, maybe soon we will breathe a sigh of relief if Paul gets a job.

Lizzy is growing and still makes us laugh at her sense of humor. She is like adult sometimes in some of the things she says. Every night I hold her in my arms before bed kiss her head and we say our prayers. Its a special time just her and I share.

So, my advice this time is keeping positive makes your special needs children thrive. Just love them for who they are and let them know they are truly miracles.

No matter how hard things seems someone else some where is having a harder time.

" We believe in miracles because we live with one!"

www.our-sma-angels.com/elizabeth

Lizzy brushing her moms hair while in her stander

2011-02-06T14:47:00.000-08:00

Lizzy brushing her moms hair.avi

2011-02-06T14:30:00.000-08:00

Sickness, blizzard and facebook works better than calling 911 - Living with Spinal Muscular Atrophy Type 1

2011-02-03T21:00:00.000-08:00

Jan.23
First thing I want to ask is to PLEASE add Lizzy to your prayers. Not sure what is up but she has been asking for extra bipap, was complaining of stomach issues and just not herself. Her O2 is great, heart-rate has been normal been doing some extra treatments but she seems to have a hard time shaking what ever is going on. I thought she was doing fine then again tonight and last night she insisted to be put on bipap around 6pm.
Wish, I knew what was this is.
Now,OMG this last week has been crazy. My mom was admitted to the hospital again last Sunday. My step father called me around 10:30 am last Sunday. He said "To have me or Christen to come right over as mom needed us to help her have a bath because she was having a heart attack and wanted a bath before we took her to the ER. " What?? She wants a bath while having a heartache? You say what? I don't not think so.I called 911 immediately and had to get myself dressed and out the door. Hooded sweat shirt, blue jeans and leopard slippers. Paul and I were out the door and at mom's in about 6 mins. Mom had a EKG and it showed she has stress on her heart. Oh my......back to Bloomington to the hospital. We were at the ER for approx 5 1/2 hours . I had to go get a nurse about 5 times and demand she have something for pain. She was in intense pain . It was terrible to watch her suffer they way she was. Finally, they gave her nitro . That did not stop the pain in her chest so I went out and got the reception people to get the nurse yet again after a hour or so wait again. Finally, they gave her morphine, That did the trick.
I was at the hospital Sunday, Monday and Tuesday with her. This time she was in a unit a step down from ICU and had a very bad hospital day. The nurses were not the most nicest and in fact were RUDE. To make a long story short she was released on Thursday. After, she was back to Pontiac she had to go to Wal-mart grabbed the portable wheel chair and she was off. Paul and Dawn had to find her. She was shopping!! It took them almost 2 hours to finally get her out of there. Go grandma!!
The van broke down on Tuesday. The heater fan quit working. Below 0 wind chill factor and the van goes out. We did not have the van until Saturday.
Jan.28,2011
I am sorry I still have not finished my post. Lizzy has been sick all week . She has been extra bipap until yesterday. She said her tummy felt full. No higher heart rate, No lower o2, no residue yet she seemed to be in pain. After trying everything I knew and picking the brains of my close friends. I tried fresh lemon( squeezed a couple drops down her g-tube) and ginger compresses she is back to herself. I am just glad she is better.
Feb 3 ,2011
Okay finally I am going to finish this.
We had a blizzard this week. My daughter Dana was stuck in a ditch that no one could get to her for over 4 hours. 911 said they made no promises. She walked in the blizzard to the nearest farm house. A friend read on facebook that Dawn had posted prayers to keep her safe. The friend Lacey sent two guy friends out to get Dana on snow mobiles. As I always say " We believe in miracles!" facebook worked better than 911!!

Suggestion: When your child's tummy hurts try taking a bowl of water add 1/2 tsp ginger 1c water (The spice) mix well put in microwave approx 25 seconds . Then put a wash rag in the water squeeze out excess water and make sure its warm but comfortable as a compress on the tummy. Sooths the tummy.

Happy 14th birthday to Madison Reed tomorrow!! Have a wonderful day princess!!

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

Sewing, Juicing and a few of MY tips- Living with Spinal Muscular Atrophy

2011-01-14T15:54:00.000-08:00

I have been so busy. I got a new sewing machine from my Dad and Stepmother for Christmas and I have been making pillows like crazy. I have NOT sewed since I was a teenager. It all come back though. Lizzy lays right there on the dining room table with me as I sew. She talks to me the whole time.

Lizzy is doing great. I have been juicing her organic spinach and Granny Smith apples and she actually is stronger than she has been in awhile. Still using donor breast milk besides herTolerex cocktail. I make her diet as alkaline as I can.

We ventured out yesterday to Easter Seals and Hobby Lobby. I got some 90% off Christmas ornaments and some material that was on sale. I got to get busy making my bows and making pillows to raise money for our October 2011 visit to Stanford.

I want to talk about helping get out mucus plugs. Lizzy has been a plugger since she was an infant. I have learned so much from her. She used to get them stuck in the top lobe of her lung. Getting an IPV machine helps keeps the plugs from being so frequent but I have learned to turn her upside down and cough her or at an angle, to use a saline neb treatment to loosen it up , suction the nose out and cough and cough and cough until you get it. She tells me what she needs. So, coming from a child that suffers with SMA that must be what works for her. These plugs can be very scaring sometimes and life threatening is some cases.

I also want to talk about how you should always be stretching fingers, legs and doing mouth exercises to keep what muscles they do have working well. I still sit and hold Lizzy and stretch her fingers,legs and mouth while watching tv. Teeth Brushing is a MUST. I had a parent once tell me that they did not brush her son's teeth because he did not eat by mouth. They still need their mouths brushed 3 times a day and use toothettes in between.
Oh and I hope you are all using D3 helps so much in the winter to keep you healthy!

Okay these are my tips for today!! Just things I do to help Lizzy I wanted to share.

"We believe in miracles because we live with one!"

www.our-sma-angels.com/elizabeth

Living with Spinal Muscular Atrophy - Reminiscing on the Year and First Quick tip

2011-01-04T21:09:00.000-08:00

It was December 23 I just had gotten done with Lizzy's bath and I was holding her on the toilet and the phone ran. Twice, in a row. UGH.... so I see by the caller ID it was my mom. Lizzy was not wanting to get off the pot. So, I missed the calls. I called back as soon as a could and no answer. There was no message on the voice mail. Hmmm well they must of ventured off some where like Wal-mart. I continued to call several times and still no answer. That was in the morning. I figured they would call when they got back.Well, at around 3:00 pm I get a call from St. Joes ( hospital 30 miles away) and it was the social worker at the hospital telling me that my step father needed a ride home and my mom had had some heart problems and was admitted. I am like "Huh, excuse me.. what is going on?" I am home alone with Lizzy with no one here as most of the time. No car, no way to leave and a emergency.... No friends to call that live close, What to do? Oh my gosh waves of guilt hit me for not answering the phone and then complete worry fills my every emotion. I said . Okay, after a few seconds of pause...I was ready to think clearly. I said "My four daughters are all out in that area shopping today one of them will stop by and get him and see what is going on. My mother had suffered a heart attack . They transferred her to a hospital 30 miles from her after the nurse that takes are of her wound on her leg called 911 because her heart rate was 154 and climbing. She had suffered a heart ache. My world has not been the same since Dec23rd.
The good news is that she is coming home tomorrow!! Thank you for all the prayers

2010 was a good year in all respects. A few enlightening experiences I encountered. A few things happened that were not things I would like to repeat. I learned also that Elizabeth is getting older in her thinking and has a opinion on almost everything. Just love her so much. She is my heart as I have said many times. All my grandkids I love so much but Lizzy lives with me and I care for her 24/7/ One of hardest things I guess was the that we heard the a little girl that lived not far away earned her wings. That one hurt bad and still does. I have kind of pulled away a bit from meeting new families online. I feel bad about that but I think it was a subconscious thing since that that little girl passed. Also , my husband not finding work and his health getting worse has also not been good things. He had a low sugar of 15 and we had to call 911 in the Spring. Then, my mom having her heart attack that was also something that really hit me hard with no siblings close to help me with her. They live out of the country or out of the state. My sister Rita has been my sounding board these last few weeks over the phone.
We lived, loved and survived yet another year . We had some great trips with friends in 2010 and made some great bonds that will last forever.
We had a wonderful Christmas this year. Its was a good time even though I spent hours the 25th at the hospital with my mom with Dawn and Caitlyn.

My tip for parents: I use Mary Kay lip mask on Lizzy's lips during her bath and use Mary Kay lip balm on Lizzy every day. Its gets the lip goobies off from the bipap and the winter dryness from the cold. I do not sell Mary Kay it just works well. I also put a few drops of baby oil gel in her bath water.

I will have many more to add . I will add a new tip on each post. I will add care info on the next post.

Have a Healthy Happy New Year!!

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

Living with Spinal Muscular Atrophy - Finding ways to help your child

2010-12-22T21:33:00.000-08:00

I decided that in 2011 I am going to focus on helping families find ways to care for their SMA type 1s babies and children. Besides taking (as usual) the best possible care of Elizabeth. I want to add to my blog about the care that it takes to keep a child with SMA type 1 healthy. These are my opinions only .

Finding a "Cure" would be a dream come true but in reality many babies and children are dying because families are unaware of ways to help their baby that were just diagnosed. That is what many organizations are doing funding, research for a cure. We all want a cure but how about these kids that can not even get a bipap or parents are not told there are noninvasive ways to save your child, The letters I receive from parents, aunts and uncles hurt my heart knowing how these parents struggle to get what they need to help these babies/children survive. .We need to take care of the kids that are here and are living NOW!!. Many doctors nation wide do not think parents have what it takes to do the care that is needed on a daily basis. In fact, many parents and caregivers do have the" inner strength" that it takes to take care of these beautiful children. The doctors give up on many of these kids right after diagnosis. They do not research and do not know there are doctors out there like DR.Mary Schroth in Madison,WI at American Family Children's hospital. Many parents believe in their doctors and their opinions and do not research SMA. We are taught at a very early age to trust our doctors and not question them . These kids can live with proper respiratory care . That is the main thing right have diagnosis. A bipap, humidifier and pulse ox can help them get stronger. Then, to be proactive in their care. Not to give in and take the bipap off because the baby is crying. You have to remember you are saving their lives. Parents have to face also their child will need a g-tube very soon after diagnosis . A type 1 starts losing their swallow very early. Many of us also incorporate many other therapies and a special diet in the daily routine. If you want to fight to save your child's life there are ways to do so.

So, word of warning here " I am out to help save as many babies and children as I can by giving the most vital info to help these kids stay healthy ". Stay tune in 2011.

"We believe in miracles because we live with one!"

www.our-sma-angels.com/elizabeth

Living with Spinal Muscular Atrophy - Loving the Season

2010-12-17T17:51:00.000-08:00

Anticipation for the upcoming first school event Christmas party consumed Lizzy's ever thought the last few days.
Today, she went to the Rotary Club's Christmas party at the Elks. The kids started coming in the room and Lizzy's eyes where huge as she could not believe she was actually taking part in this grand event where there was so many other kids. It was a party for "Special Kids" and they all were treated very special. The teachers all knew we "freak" around other kids and worry about her coming down with an illness. So, they did their part in keeping the other kids from hovering over her." Sigh of relief", for Christen , Lizzy and I.
We sang some Christmas songs, ate Lizzy's "favorite lunch" Chicken tenders and french fries. Then, something quite magical happened there was a man in a red suit and his wife that made a "Grand" entrance and seated themselves down. The crowd all was so excited. The looks on the kid's faces were totally priceless. Each child's name was called and Santa gave them a gift on his lap. Lizzy included. Each child got a present they really wanted. I have to hand it to the Rotary Club they did a great job on the gifts. Not a sad look on a child's face and there was quite few kids there .Lizzy broke out in her "Red Blotches" because she was so excited.

This time if year is totally magical and full of a spiritual awareness and the season of love. Family and friends are so special that gives you a sense of inner peace. The newest snow left a sparkling blanket of seasonal magic to the whole neighborhood.
I have been baking up a storm . With the last winter blast we had this old drafty house flatten a batched of yeast dough when I was making my coffee cakes. It was upsetting but that is typical for baking in the winter. I have a lot of baking to do as presents. With Paul's unemployment being cut off we need to save as much as we can this year. Not knowing how we are going to survive these upcoming months has consumed my waking thoughts these last few days. We just found out on WED that his unemployment extensions have run out. In the job world they call for phone interviews but that is as far as it goes. His diabetes has gotten worse also. He has very low sugar spells and we do not know what is going on. So, he is disoriented and he turns gray. I pray we figure this out. He has a doctors appt with Lisa this next week the nurse practioner. Please keep him in your prayers. Enough said about that. Its a time of the years we should be happy and not worry. I know easier said but I believe God will look out for us.
Prayers for Charlie. Charlie is sick!! Please add him to your prayer list!! He has never been sick like this at home before.
Many prayers for our friend Madison. Lizzy loves Madison and she has not been feeling well for a few months now. We love you Madison and have you in our prayers EVERY night. Our friend Kaitlyn in Canada has not been feeling well either for awhile so add her prayers also she has been in ours every night also.

Some of our good friends have made sure we will have a good Christmas this year and to have something like that to look forward makes you as" giddy" as a child. We have family too and that makes Christmas even more special. Lizzy is our Miracle and makes the season even more better, Corbyn makes it fun also. I am thankful for all my kids, grandkids , my siblings , parents , Mother inlaw and just everyone that in my life. I will miss my brother Rory this year as he will be in Kuwait this year and not in the states.

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

Snow Snow Snow!! Living with Spinal Muscular Atrophy

2010-12-06T16:37:00.000-08:00

Lizzy is loving this snow!! She had a blast outside on Saturday. Until she went out in it she was asking all day to go out. She was concerned she did not match!! LOL Our Fashion conscious 7 year old.
She was yelling at her Mom saying" Faster Faster!". She was so excited. Then, when she came in she had been so excited and with the cold she was having some trouble talking. Extra coughs and she was perfectly fine.
She is so excited this year about Christmas she started singing Christmas carols shortly after Thanksgiving.

Lizzy has a teacher coming to the house twice a week now and is loving it. The school provided her with the clicker 5 program also today. She is so excited to have a teacher! All day before her teacher comes Lizzy is so hyper!!We really likes her teacher Becky. I actually have a baby monitor set up and I am in the next room. Shocked that I leave her side? I am. I did not think I could do that but I have. It was my decision . So, far Lizzy lets me know if she has "bubbles". I never thought that day would come but it has.

Paul and my anniversary was yesterday. Thirty six years married to the same man. What is really sad is that he was gone all day helping Brandon do some things. I guess the older you get in the male mind sometimes its no big deal. I dropped a few tears here and there all day yesterday. I was glad I didn't have to watch football but why was he not spending the day with me? Too me it means a "Big deal". I have been through a lot with this man and I think celebrating is something we should of done. We used to take off and go shopping for 3 days and stay at a motel. I understand we do not have the money for that these days but to go some where would of been great. Its over with done. Time to go on to the new day. Thinking positive is something I try real hard at. Some days its harder than others. Is this instance in my life an "Eye Opener"? or is it just life as you grow old together? Hmmmm... That one will take some time to figure out. Yeah I know, "STAY POSITIVE" okay I will try

Its is bitter cold here right now!! Last year it was a cold here all winter. At least Lizzy got to go out at least once this year. I miss CA this time of year.

Elizabeth is doing quite well the older she gets. Her strength is quite remarkable. I am so thankful she is doing so well. Patience is one thing she has none of though. Everything has to be right this second!! .

I love Christmas and that warm fuzzy feeling you get this time of year. You really are thankful for the friends and family you have.
Many Hugs and Happy Holidays!!

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

Living with Spinal Muscular Atrophy - I am Thankful for....

2010-11-17T22:17:00.000-08:00

Thanksgiving is in a week. Making my list here of some top favorite things I am thankful for. I am thankful for my beautiful seven year old miracle granddaughter Elizabeth,my grandson Corbyn for making me laugh because he is so darn cute, my Caitlyn, my Reed Michael,my "mouthy" Rachael ,my "brown eyed" Robert Allan. I am thankful for my beautiful kids, my cabby wonderful husband , my family and my wonderful friends. Oh and cheese cake..... I love cheese cake.

Its been heck of a day so I am updating. As usual on WED (as well Monday and Friday) Lizzy and I am home alone. The phone starts ringing this morning and its my mother. She is getting up there in years and it seems today she was feeling really bad. She was emotional and crying non-stop. She was in so much pain with her legs. She says I just can not do it anymore. Talk about a huge splash of water in my face as I was bathing Lizzy. I am like okay mom calm down. What is going on? She tells me where she is hurting and how she can not stop crying , She wants me over there now to help her. What to do here? I can not help here. I have Lizzy here alone, no one is in town today and I have no car. Not that I would travel even across town with Lizzy alone but I would. if I had to. My mind is thinking a mile a minute.... What to do hmmmm How about some reverse ..... Psychology... Using my college background for a change, Okay, Mom remember when I was a new mom and got all stressed out you would say" Go wash your face go soak in the tub bath you will feel so much better!!" I said. it works liked a charm every time, Making her feel like a mom again was the answer..... Low and behold it worked!!

I made some calls today and I think I found an agency to help mom a few days a week with some light cooking, vacuuming. taking her to doctors appts etc. She agreed!! Oh my.... guilt has been lifted from my heart. Thank you God. I do all Lizzy's care and I do not have time to take care if my mom too. Not that I would not want to help I just can not at this time in my life. My other 4 siblings of my mothers children live out of state or out of the country so I am now making this decision. The company I found does FBI checks on all their employees and is bonded. Sounds like just what we need!! My dear siblings " Bite my hiney" You ;left me here alone to deal with this I am doing as I see fit. If you don't like it get you hineys home and HELP. My plate is full thank you very much. Mom is not going to around forever and saying you can not afford to come back home to help is a crock. I love you guys but hey... you have not been here.

Lizzy has some sinus drainage but doing great. I still have her bipap back up rate slightly up to 26. Just to get her some extra support at night. She is doing okay though. She is a great kid.

My life changed the day she was diagnosed. I think God put her with me so we could make a difference. I love her spunk. I lover her determination to succeed. I love her so much it hurts sometimes. She taught me all about life and its true meaning.

Go hug someone today. Some one you care about to let them know you care.

Call your Mother, or your Dad. Just tell them YOU......care about who brought you into this world.

" We believe in miracles because we live with one"

www.our-sma-angels.com/elizabeth

Living with Spinal Muscular Atrophy - Why?

2010-11-14T17:16:00.000-08:00

Lizzy lost 3 teeth in two days!! Two last night and one today. One more to go and we will have all the loose ones gone!!
It has turned colder here again. Not even ready for it. Then, Thanksgiving not too far away and CHRISTMAS. Oh my where has the time gone?

I was on the phone the other day with the Mom that lost the little baby Grant a on Lizzy's birthday. How is it I feel her pain? How is it I feel connected to her? Its tears my heart apart just thinking about what happened to this baby. To know we were so close yet so far away. I could of helped them so much. if I had known. I do not understand why this happened to them.

I never understand the why with SMA. Why is it that with this disease doctors in our area and many area across the globe do not want to deal with it? Why are some doctors still refusing to treat SMA and giving parents the same diagnosis as we were given for Lizzy? Why are so many trying to stop the research in gene therapy? Is it the drug companies wanting more money? Is it that they do not want treatment? We all NEED to start paying close attention what is going on in The SMA World. What is so hard about getting these kids the treatment they need to help their quality of living? I do not know if SMA will ever be cured but if US will not allow kids to get treatment here we will find some way to go out of the country to get it.

Makes no sense to me why we having these doctors are not wanting to help these kids. Some SMA organizations are fighting against the gene therapy. Why, after we have come so far? These people need to look into their own cold black hearts and ask themselves why they would not want to help an infant or a child. Why are they being so cruel? Why is it so political?

God help these people causing so much controversy over the most promising treatment.
Look in to a child eyes with SMA and tell them you do not want to help them. Tell them you do not want a cure.

I do not think we will be going to the FSMA conference this year. We just can not afford the cost to get there and all the registration fees. Sounds like it will be a grand affair. We have to look at the big picture. Our small van with all Lizzy's stuff is just not big enough to drive that far anymore. She has grown do much and her Dad and Grandfather also want to go this year.We got one adult registration fee waved but then you have 3 other adults and Lizzy we have to pay out of pocket for. Then the motel room. As much as we want so much to attend for Lizzy's sake I do not think we will be able to swing it based on our current income. We shall see. Lizzy's heart will be broken if we do not go but maybe we can do a compromise. There is always CCK in the Spring or maybe just a families get together somewhere.

We just heard one of Lizzy closest friends Drew was in the hospital recently. Prayers to you Drew!! He is home now but still not feeling himself. Prayers to Larkin Bish as she is not doing well and in the hospital. I talked to Nana Barb and Gina Bish yesterday. Please add theses kids to your prayers. The power of prayer is so strong. You can feel the chain around the world filled prayers for these beautiful kids.

Another child with SMA earned her wings in Peoria. How more babies /kids will die before these doctors will listen to us?
R.I.P. Rebeckah Marie Courdt (March 5, 2007 – November 14, 2010

Fly high little princess!! fly free of SMA!!
Prayers to the family of Rebeckah to be able to get though the days ahead.
Breaks my heart.

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

Living with SMA - I have a voice!

2010-11-08T12:51:00.000-08:00

I have my voice back!! I am excited!! Its been almost two weeks with out a voice. I am feeling a lot better today.
I feel like I have been lost for two weeks!! Lizzy has finally calmed down today and does not freak out when I go out of the room for a second. Not sure what is up with that one. I have taken totally care of her myself since before her illness then mine. No help at all. Amazing, how long recovery takes when you yourself are sick taking care of another sick and not resting at all. Its been very stressful last few weeks. No one understands why I have taken so long to recover. I got myself on some antibiotics and this is day 5 and Success!! My sinuses have been bleeding also. My gosh its been a two week long nightmare!! Every one kept saying to me I am so cranky........... well yeah..... HELLO any one want to help me with Lizzy or with other things around here? That does not happen sorry to say. My daughter Jess gave me a lecture on taking care of myself.... Yeah, okay Jess...... I have not even covered my gray/white hair in months because I do not have the time to do that. Jess says ," Mom you are getting so much white hair. " In said ( LOL) I have not colored it because I want everyone to see what they have done to me!!" LOL I just had to add that comment........ to her mine discussion!! She does not come by much since she moved out of town. Yeah, feeling sorry for myself you got it.
Today , I am making out my bills and mailing them. Getting caught up on laundry, mailing out a few packages, reading my 500+ emails that I would only skim through and see which ones I needed to reply to quickly Some days I did not have have the energy to get online.. Busy huh? Its amazing what does not get done when you are sick . I have tried so hard to so much more this past few weeks buts its been impossible for me to do anything more than what I have done. The great thing is Lizzy is doing great an that is the man thing. I was thinking what would happen to her if something happened to me. Tears would well up in my eyes.I really do not want think about that. I think God will keep me around as long as I am needed. My bond and commitment to Elizabeth is very strong. . My bond is strong to all the families I have met , know and help.

We have gotten another BM donor for Elizabeth and we are very excited. Soon as we lose a donor another mom contacts us. Talk about Divine intervention!! Breast milk has helped Lizzy so much!!

Many prayers for Lizzy's friend Drew. He will have surgery soon for his hip. He and his family have a very special place in our hearts. A great family that we love spending time with.
Prayers to Mary Nelson she is still recovering. Prayers to Kaitlyn in Canada and prayers to all the babies/kids that are sick or recovering.

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

Living with Spinal Muscular Atrophy - Inspired By Lizzy Boutique hair bows and NIH SMA Workshop

2010-11-06T09:55:00.000-07:00

My boutique bows I have made have been quite a success with fundraisers to help with Lizzy's benefits . I thought I would share some of my bows that will hopefully be on the HOPE and Light Ebay auction. I am a bit late sending them but we have been very sick here. I did not want to send any nasty viruses to any kids. So my apology to the Millers for not getting them there on time. Here are some I am donating to the Hope and Light fundraiser. Where else can you get boutique Hair bows actually made with a grandmother's love?

I thought I would share this from my friend Vinny's facebook page

by Vincent Gaynor on Saturday, November 6, 2010 at 11:02am

Thank you Vinny!!

After scouring through 15 hrs or so of footage, I wanted to discuss some of the info that was presented at the NIH SMA Workshop. It is my humble opinion we as a community need to really start to listen, learn and pay more close attention to what is presented to us parents and families in the SMA community. We can no longer take opinions from any organizations, researchers or clinicians as gospel; but we must educate ourselves and take full responsibility to make educated decisions on the research ourselves. We must look at the data to see if there is a significant life extension in the most severe mouse model and move forward from that point. If there is a significant extension of life, to then continue to move forward and conduct further safety and efficacy studies. If there is not a noticeable increase in life, or there are toxicity issues we must not continue to fund costly trials, rather move into other avenues until we do see a program that is worth funding. For our kids we do not have the time to continue a multiyear trial on a therapy that shows signs of very little hope from the beginning. A minute amount of the current known drugs on the market have been screened for SMN 2 up regulation. If a therapy is showing very little to no promise we must look at screening some of the overwhelming majority of other drugs that are currently available.

It is my opinion that using the term "Responders and Non-Responders" in description of a therapy can be inaccurate and misleading. After all, at this workshop the researchers discussed the vast differences, even amongst a small population within the same phenotype with exact same amount of SMN 2 copies. It was discussed how difficult it would be to see what actual benefit a therapy had since there is so much variation. Thus how can a therapy that showed little to no effect in the disease mouse model then be correlated to humans and inferred to have responders and non-responders. There currently is no accurate mechanism that can decipher strengths and weaknesses. We must show results first in the mouse model.

At present the best tool we have as a community is the SMA type 1 mouse model to judge potential effectiveness of a therapy. It is not the end all be all of a particular treatment rather an important starting point to see if a therapy is promising enough to merit continued research in a program. I have heard presented that we should move away from the SMA type 1 mouse model as it is too severe. I totally and completely disagree with this notion. It is not the mouse model that is the problem it is the therapy. After all there are now 4 different completely independent labs that have shown significant extension of life in the mouse model in it's current state. The mouse model is severe, just like the disease in type 1 SMA. So if 4 different labs have been able to improve this model, than the model is effective and it shows the promise of those particular avenues of research. We should look for other therapies that can duplicate or improve upon the results these labs have seen.

The Stem Cells and the Gene Therapy were amongst all of the other programs that were discussed at this workshop. In my opinion the "false hopes" of the community regarding the stem cells can be attributed to not what assumptions parents have made rather what has been presented to them. I have never seen the stem cell program referred to anything other than "The Motor Neuron Replacement Program" or MNRP for short. What that title alone infers is that there is a replacement of motor neurons. A regenerative therapy. Yet at the workshop the lead researcher of the MNRP Hans Kierstead informed the audience that the motor neurons he has produced, do not innervate. They are incapable of producing the necessary signals between the spinal cord and the muscles. Rather these motor neurons could possibly offer Trophic support. Meaning they will act as a crutch to existing motor neurons. I have heard parent's being told "the Gene Therapy will only stop the SMA but the Stem Cells are going to Cure SMA". This statement was incorrect and was not substantiated by the lead researcher himself. It was stated that this therapy will be done in end stage patients. Type 1 patients who are not expected to live. Here is my issue with these statements. If the stem cells only possibly offer Trophic support, it does not make sense to move into a patient who in theory has lost most if not all of their motor neurons already. This therapy would have to be administered to presymptomatic or the earliest patients to be effective based on the data that was presented. The researcher also stated that we are many years away from having the capabilities of actually replacing motor neurons. There was zero increase in the lifespan of the type 1 mouse model in this program.

As far as the Gene Therapy when administered early on in the disease it showed a significant increase in the SMA type 1 mouse model. These early treated mice increased from the 15 day life expectancy to upwards of 400 day survival. A monumental improvement in the mouse model that has never been seen before in a viable treatment for SMA. The question is the window of opportunity to get into a patient effectively. In the mouse it was very early however in the non-human primate the motor neurons were targeted effectively from various ages all the way up to 3 years of age. Which maturity wise would correlate to a young child in humans. The difficulty of predicting how this will correlate to humans is that at present time there is not an SMA non-human primate. The only way to tell what actual benefit can be expected in our kids is via clinical trial. This will be a very important trial for our kids. Many questions will be answered in clinic. What is important to understand in theory is that if the Gene Therapy does not work in later type 1 because of significant motor neuron loss... then ANY drug to up-regulate SMN 2 will be ineffective. Based on the motor neuron loss theory; if you are transplanting SMN 1 and the motor neurons are not there, then any drug that up-regulates SMN 2, to mimic SMN 1, but at a drastically diminished efficiency than the actual SMN 1, will not work either. It is like trying to put gas in a car with no engine.

We must not rely on others to guide us, rather we must look at the data and let that be what we base our own opinions on regarding therapies for OUR children.

Here is the link for the NIH Workshop. To hear Dr Kaspar speak in his own words fast forward to around 3 hours and 45 minutes. To hear Dr Kierstead speak in his own words fast forward to 4 hours and 31 minutes.

Since the link is a changing link here is the link to all 15 hrs. Dr Kaspar and Dr Kierstead both are in part 3 at the above referenced times!

http://www.sonicfoundry.com/catalog/d99fb93d-76db-455f-8ec6-345d3a717e54.aspx

I am proud to say if you look at the sponsors of the NIH workshop under the logos of FSMA, Fight SMA, MDA and SMA Foundation you will see Miracle for Madison and The Sophia's Cure Foundation. B4SMA was also mentioned!

"We believe in miracles because we live with one!!"

www.our-sma-angels.com/elizabeth

Living with Spinal Muscular Atrophy - Fighting illnesses, New doc and Mean people

2010-11-05T22:36:00.000-07:00

Elizabeth is doing really well after a bad respiratory illness . Wish, I could say the same for me. Its been a brutal last few weeks and I am still sick. Sinus cleanse has been a daily ritual. My sinuses have been on fire it seems like. I still do not have much of a voice. I have hardly been on the phone or online. This illness has kicked my hiney.

We met Lizzy's new doctor. We really like her. She was with us for a few hours the other day just talking. I gave her lots of reading material. We also discussed how hard it is to get things you need in this area for medical needs. She impressed me on how she values life. She thinks we need to start a support group here. I am going to write a hand-out to give our doctor of all our resources She was impressed with Elizabeth also.

We had Lizzy's IEP and it went well. Thank goodness!!

Now the kicker.... looks like we may not be able to go the the FSMA conference in Orlando this year. I do not think we can swing it but I am praying for a miracle for Lizzy's sake.. This is Lizzy's time to shine. This is something she looks forward to do every year now to see her friends and deserves be a part of. I seriously think the reason we could not get much help with going this year is because of me. I was treated very badly in CA after the conference by a very important person from FSMA. I was yelled at and totally intimidated in front of others in the hallway before a meeting with DR. Wang . I was suppose to speak at the luncheon minutes later. This happened in front of Elizabeth also. Totally uncalled for . Only because I wanted to thank another organization for helping us with helping the trial Elizabeth was in and for putting on the luncheon. After, the end of the intimidation session with this person. I told him that "this is so wrong... to be this way and "You all need to work together for the kids!". I could not speak very well at the luncheon because I was so very upset after that. . This happened to me , yes me !! Lizzy's Nina who tries to help everyone she can learn about SMA. I have played this out in my head many times since this happened. At no time did I do anything cause such bad treatment. I knew then we would no be going to Orlando for the conference because of what happened . What happened to me was so wrong!! Mean people JUST SUCK!

Lizzy shines any way. She is our miracle. We will go back to Disney some how.. I know it will break her heart if we do not go thois June because she says every day " She can not wait to go for the conference at Disney." Maybe we will find a way for her to go but its just so wrong what happened to me.

Paul had three calls from jobs this week but they have not called back for an interview.

Please say a few prayers for us . I need some to get me better and he needs a job soon!!

Many prayers for Mary Nelson.

Lizzy also was serial casted this week.
We have been invited to two Christmas parties already!! The holiday season is arriving fast!!

"We believe in miracles because we live with one!!"

www.our-sma-angels.com/elizabeth

Living with SMA - Sickness has hit us Hard

2010-10-29T15:44:00.000-07:00

Grab a box of kleenex and watch this video . Its beautiful!! Please watch!!

http://www.youtube.com/user/robbierosensings#p/a/f/0/mZ51wEIWrNk

I am now sicker than a I have been in awhile. A brutal virus has attacked our upper respiratory and its some nasty stuff. Lizzy had gotten very sick by Tuesday. I have been doing extra treatments for her since she started getting sick now its hit me. She has not been on bipap since yesterday. She is much better now but it has taken much work to get her through this. I mean its that thick nasty junk in your throat, your nose constantly runs,.Its hard for me to get productive can you imaging how its been for Lizzy? I woke up this morning feeling like I could not breathe. I felt like my breathing passages where shutting down. I gasped for air upon waking up.
My poor Lizzy. She is such a trooper to be going through this. Oh my its been quite an ordeal all week.She is doing great get through this!!!. She is off bipap and feeling much better. Still getting nasty crude out of her nose.
Now how did we got this illness?. Hum..... ignorance and somebody trying to act like that dote over Lizzy and exposed her to people that had their faces in hers. GRRRRR I do not try to keep Lizzy to myself when we go places in public I like to be around Lizzy because I hover over her like a mother hen keeping others out of her face and not touching her. Like DUH ..... sick people stay away from us!! You suck!! To put Lizzy through this illness is. Who would go to a child's benefit with a virus?

DR.Schroth called Lizzy is a script on her way home from Florida on the plane. Bless her heart she is such a great lady. How many doctors would do that? Ahhhhh lets see ..... one DR.Mary Schroth!!
So , if I have not responded to you I am so sorry!!
Keep us in your prayers!!

Please view theses two sites its so important to get the word out on how
dangerous the problem of HAIs and specifically VAPs can be , The two site for those are at haiwatch.com and
vap.kchealthcare.com

" We believe in miracles because we live with one!!"

www.our-sma-angels.com/elizabeth

Living with Spinal Muscular Atrophy -Frustration with Ignorance

2010-10-25T19:03:00.000-07:00

I have to say I am very frustrated with the medical profession in this area when it comes to SMA. How many babies are going to die before they actually accept that there is a care guide for SMA.
I spent the morning talking on the phone with the parent of the baby that earned his wings a few weeks ago at the tender age of 9 months old. He lost his life at in area hospital. He was a twin. His sister shows no symptoms but has not been tested yet.
Listening to this mom's story brought the same grief I felt over 7 years ago. How can these specialists in central IL can be so unprofessional not to research the information about SMA and give the parents NO HOPE? They actually told them its inhumane to trach a child with SMA. What? Its inhumane to let a baby die of suffocation and starvation. He did not die from SMA he died from ignorance of the doctors in my opinion.
I miss DR.Hough so much because he listened and did everything he could to help Elizabeth.

Recently there was a video posted on a well known SMA doctor that questions prolonging these kids lives. Really? What the heck This doctor britches got so big that they are playing GOD now? This doctor does not deserve to care for these precious children. The video was quickly removed with in hours after some parents saw it. Why does this doctor adorn herself/himself an SMA doctor? What is going on? What gives these doctors the right to say these things? She/he is a traitor to our cause. She/He is traitor to them self.

We need doctors that will fight for us like DR.Schroth!! She has helped us many times in our fight to save Lizzy. She is true to us and these kids.
These children are precious gifts and need some special care from people who love them. DR.Schroth is that that person to us and many kids.

There is a family care guide for SMA. http://jcn.sagepub.com/cgi/content/abstract/22/8/1027 Its been published since 2007 This is the universal care guide for SMA. There is no excuses for doctors any where not to know about this.

We need to get more awareness out there!! We need to make these doctors listen to us!! What can we do?
I need ideas here to get these doctors to read the information and practice this care plan!!

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

Living with SMA - The Kindness of People in the Community and Another Divine Intervention

2010-10-24T16:59:00.000-07:00

The Fighting for Lizzy Benefit was last night. It was not a huge turn out but considering the weather and how this area has been hit hard with the times it went well.
We raised enough money to help pay for Elizabeth's therapies, some trips to doctor visits to Madison and some things Lizzy needs we are unable to get her . That is just so awesome!!. My bows I made brought in some good money. I was shocked to see a bidding war between three ladies over them. Amazing how something I do as a hobby but as one grandmother told me ( made with love) went over so well and raised money for Elizabeth. The bows I make were inspired by Elizabeth. I was going to buy her some one day and I saw how much they cost and decided I would teach myself how to make them and I have now for a few years. The bows I sell as logo " Inspired by Lizzy".

I was disappointed that my old friends from here and some family did not show up but all in all it went pretty well. Our goal was getting enough money for good down payment for a E150 van for Lizzy. That did not happen but your goals are always bigger than reality and we are just as happy for what we got. So, many people we did not even know came to the benefit because they heard about Lizzy and wanted to help. It was so great. Lizzy has touched many lives in this community. Thank you all that attended, helped , donated and bought!! You make me proud to be from Pontiac,IL. All four generations for the auctioneers were there from 1 family. The auction went great. My friend Deb Zebell helped so much with getting the donations and so did Billie, Dawn, Melanie, Vickie and Beth. Christen did a lot of running herself. Barb did Face painting also.
Its been a crazy last few weeks.

Lizzy is over her sinus infection and doing well. She had a blast last night. She is super whiny today. Kinda of hard on the ears and the nerves. We were going to Easter Seals today for a Halloween party but.... Lizzy was way to whiny to go. Hoping she is NOT getting sick.

My drama for last week was Christen losing my debit card. You know that feeling where you get this over whelming urge to puke your guts out? The pain in your stomach is so intense you can hardly breathe? We were shopping after swim therapy last week and had to get some last minute things for the benefit. I used my debt once. Well, Christen keeps it in her wallet with my drivers licence because okay lets face it I do not leave the house much and with all the things we have to carry around with us me carrying a purse I might loose it. It had fell out at one of the stores we went to when she paid cash for Lizzy's Halloween costume. She had not put it back in the regular spot and had it in her cash. After lots of prayers she found it in the last place we had went. She had ran in alone. The cashier had picked it up off the floor and gave it to the service desk.
Oh my gosh!! I can not believe an honest person found it. Amazing. Divine intervention at work again!! My chanting prayers were answered. breathing a "Sigh of relief" Christen got a 15 minute lecture after I got it back. Then we went grocery shopping.

Reed Michael is home. He is some pain but did not need surgery because he is healing well. He had streph in his knee and is healing well. It was great to see him !! So glad he is home. He can not do much for eight weeks.
Paul has been actively looking for work.... No luck yet!!

Now, to get my house clean and life back to normal as ever as normal is.

Thank you for all that helped and donated at Lizzy's benefit!!
Keep us in your prayers!!
"We believe in miracles because we live with one!"

Fighting for Lizzy bracelets on Now on Sale for $2.00 and .50 a piece shipping and handling.
Send money orders or checks to:
All proceeds go to the Fighting for Lizzy Fund
Make sure to include how many and your address

Fighting for Lizzy Fund
219 East Water St.
Pontiac, IL 61764

The Dove means HOPE.

www.our-sma-angels.com/elizabeth

Sigh of disbelief and Believing in Miracles - Living with Spinal Muscular Atrophy type 1

2010-10-15T13:44:00.000-07:00

Don't you love Lizzy's new kimono? Her Aunt Rita and Uncle Jim send her one every year for her birthday!! Hard to believe Elizabeth is seven years old!! She did not want her picture taken so I had a hard time getting her picture above.

Its been a while since I have updated. Lizzy has been great for months. She is very much quite aware of EVERY-THING that goes on around her. She is very opinionated about EVERY thing also. If you need to know anything just ask her. I love her so very much. She is just a great kid.
Lizzy is now showing the first signs of a sinus infection so I have upped treatments today. Keep her in your prayers. She is okay right now but secretions galore and stuffy nose. No swim therapy today :( first time in a long time. We just could not chance taking her out with the symptoms she is having. She was mad about missing swimming as she loves it!!
These days I have been so busy . My husband's lap top was broken (from unknown means) I do not have time to pop on the home pc to update. I can not get too far from Lizzy because she needs suctioning, moved around, help with home work or just wants me close. Which is all the time. I am not complaining its just the way things are around here. Its my life.

Reed Michael graduated today from the guard but.... with all that pride we felt was quickly replaced with worry and concern due an accident or something that recently happened to Reed . Just look at his leg below.after the cake I bought for him that will be taken to him on Sunday. This all happened right after graduation.

You are beaming ear to ear with pride , then a sigh of disbelief and the reality of Reed Michael having surgery today because of an injury or a spider bite. His leg swelled double in size and having to be drained. Have you ever just been so upset that your knees go weak and your heart just aches and you are afraid to breath? OH MY gosh....... then you think OMG.... this is NOT A DREAM this is Reality!! This just sucks!! Poor Reed!!

The school here is not getting Lizzy a tutor. Its now almost NOVEMBER. She is learning on the computer yes. but she needs a teacher. She just does not cooperate for me or focus on the one to one with her and I. The Video conferencing is out according to the school. Come on people. Elizabeth is 7 years old. I have been trying to do this alone but as GREAT as I am I am not educated to be a teacher. I am educated in Sociology. Political Science and Criminal Justice. I am a great nurse to Lizzy but that is an inherited and in my genes. My great grandmother was a midwife in Canada. Teaching qualities have never been my expertise.
We have been doing ABC eggs and she is doing well but she needs more.

On a good note. I had two great things happen to me this week. My blog is on the top 30 on the SMA web-sites for 2010. That was quite an honor.People actually read my blog!! Thank you.
I also got a letter from another parent praising me for just being me. That was really nice and quite unexpected.
Lizzy's fundraiser is next week-end. Lots going on!!

I have been making hair bows and will be selling them at the fundraiser and making some for another organization. I am also making gifts baskets of many different items to do a white elephant sale also. I have not had much time all summer to work on making bows but now in the evenings I am making some. I need to power sew to make a lot!! If I was not so darn picky I could mass produce!!

Paul has not gotten a job since he has finished school. He has applied for jobs but NOTHING as of yet! I know patience.... He was not born with patience!! He is afraid its his age. The man is 56 years old.

Robby was here for his birthday Oct.3. He went golfing with Paul. I made him a home made cake. His school colors. Hard to believe he is 13!! Oh my where has the time gone. I remember his first Harley Coat we bought him. It was size 2. Brings tears to my eyes. Life seems to fly right on by.

A baby earned his wings a few weeks ago that was diagnosed with SMA after he was hospitalized at age 9 months in an area hospital. We live so close but feel as if we were so far away because no one called or did we know about this little one. This hurt us so bad that the hospital is still not doing the protocol for SMA. Send prayers to this family. I have talked to the patient care director and got no where but did sent her the respiratory protocol from DR.Schroth. What can I do to get these people to listen to me? Who can I talk to to help me with this?
An article about Elizabeth is being done soon by a local paper because of her benefit. I will again express the importance on the area doctors at least looking at the protocol. It could save a baby's life. These kids are miracles and their lives so precious.

Please add Reed Michael, Elizabeth and all the families that need prayers to your list.

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

Learning, Loving and Seventh Birthday- Living with Spinal Muscular Atrophy Type 1

2010-09-30T20:16:00.000-07:00

Our Rock Star, princess, little miracle child turned SEVEN Years old yesterday!! Can you believe it!!
Its hard to believe she is this old. She is doing well and such a fantastic kid!! Thank you God and thank you to my dear friends in the "SMA World" for helping us get here!! What do you say now DR. Morgan? Hmmmm? He told Christen" Lizzy would not make it to one let alone 2 years old." "EAT SOME CAKE DR. Morgan!! " God bless you DR. Morgan . I do not let that man get to me anymore. Lizzy is doing well and that is all that matters!!
Lizzy has been on the AA diet since she was 1 year old. She has been on NIV protocol since she was nine months old. We have great doctors and great therapists. Last hospitalization was March 2005. She has been on donor breast milk since she was around 2 years old. I still research everything I can and learn more all the time!! I started using Fruits of the Earth a few weeks ago and Lizzy is doing great on it. I use about 1 teaspoon in her food mixture.

We have been so busy!! She has been doing school work now every day for 5 hours a day now when we can. She is like a sponge!! She has been doing http://readingeggs.com/ and she loves it!! She is already actually reading!!

We have down loaded the clicker 5 evaluation program but I still trying to figure it out.

Lizzy got her new Elbow splints in the mail last week and what a HUGE surprise. One pink one purple and she wore them with out a hassle!!She has a new seating system coming here soon for her purple power chair.

We have had so many appts these past few weeks.We had 4 appts last week. Saturday we had a football game with Caitlyn cheer-leading , grocery shopping at Sam's and Sunday Lizzy's Party. This week we had a appt in Indiana with a great lady that said "we can do things ourselves to help Lizzy's rib/shoulder blade"She is a Pediatric Myofascial Therapist Specialist that has taught at Northwestern. She does all sorts of Physical therapy. She is excellent!! Taught us how to help Lizzy back , ribs and to also help Lizzy's scar tissue in her tummy to prevent getting a bigger g-tube. I was impressed!!

Tuesday we had Speech. Yesterday , was Lizzy's "Real Birthday Day" as she told me and her and I watched Corbyn. Well, Lizzy and I watched him. He was into everything!! From toilet paper to dog food!! He was fun though but wore me out!!

Today Lizzy had swim therapy and we went to Hobby Lobby then home.

"sigh of relief" I can relax tomorrow. Just Lizzy and I tomorrow I think so far

Paul's last day of school was today . He scored the highest in his class and missed NO days of school since the day he started. We are quite proud of him. Now, he can relax a few days and hopefully get a job soon.

I feel great things coming for us in the near future. I hope it happens.

I just have to say if your child has SMA please get blood tests done every six months to check if things are okay. no matter which type they are. Many older kids are having issues and I pray they find a way to help these precious heros. I had to make some changes in supplements recently because Lizzy was starting to drop in her aminos. Also, Calcium citrate is so important, as Vit D 3 is and Vit C. Make sure you check essential Fatty acids, Amino acid profile, Carnitine Levels and Vit D levels also besides regular blood tests like the CBC with differential.

You need to ask for these tests because the doctors will not just do them. YOU NEED to keep a close eye on these things. To help keep your child strong and healthy do these tests . Its so important. I am pleading with you please. Help your child. You can not blame it on the AA diet because that is a crock in my honest opinion. These kids never did so well until the AA diet. The diet works if you get blood tests done regularly and monitor diet and figure out what works for your child . Not saying any parent has done anything wrong just some constructive advise from a grandmother that cares about each and everyone of your children.

Well, as fall takes over we with great sadness will miss the summer. Stay well and healthy. Thanks for checking in on us.

God Bless and Thank you for being a part of our lives!!
Thank you for all the birthday wishes and the the gifts for Lizzy.

"We believe in miracles because we live with one!"

www.our-sma-angels.com/elizabeth

How Lizzy uses the computer - Living with Spinal Muscular Atrophy

2010-09-12T21:22:00.000-07:00

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

Living with Spinal Muscular Atrophy - "Life is good!"

2010-09-07T20:54:00.000-07:00

Life is good. Every just think to yourself, " life is good?"Things are better? Then, take a big "sigh" and say "Oh yeah" this is what its all about.

Lizzy got her new Bipap/Vent. The Trilogy. She loves it!!! We switched to a wonderful respiratory care company out of Indiana . Mobile Medical Maintenance. They have RTs in Peoria. DR. Schroth hooked us up . No more dealing with denials from Apria !! Thank you DR.Schroth!!! Apria the company in general has been the biggest pain in my hiney since we have started getting respiratory equipment for Elizabeth .Yeeeee Haw..... As, I said, Life is Good. They are also trying to get Lizzy a new suction machine and a few other things.
Elizabeth is actually wearing her hand splints , knee immobilizers every day now. She has been back in her stander also. Life is good.

We are searching for a new donor for breast milk for Elizabeth. Her current frequent donor is pregnant. So, happy for Dina and her family but going to miss her . She gave Lizzy her most precious gift that only God can make. Thank you Dina so much for helping Elizabeth.

Elizabeth is on her computer most of the time and has been for over a year. She finds so many games online she can play. She uses an online key board for the up /down buttons and uses it to type in where she wants to go. Its great to see her able to go any where she wants on the internet. (Yes, she is monitored). It makes her world so much better. Life is good

My handy husband finally replaced the down stairs light fixtures. Some that have been gathering dust since 2004. I bought some of them myself when I was getting ready to redo my house. Things have not been the same around here since 2004 The carpet in the living-room was finally replaced . It has been in the dining room rolled up in a corner since before Christmas last year.
Life is good.

I got all my wood work washed ,my window seals clean and my curtains washed while every one was at the parade yesterday. Life is good.

We have been cooking up a storm around here. Christen has learned to make pie crust. She made a pecan pie and pumpkin pie last night and brownies tonight. I am totally allergic. I break out in fat every where!!I have been good. I am getting ready to make hair bows again for the holidays and for a few fundraisers. Its been hard with all we have to do all summer. We are so busy still but no big trips for awhile.

Lizzy fundraiser is October 23. We have a great committee and I think it will be a huge success!!

"We believe in miracles because we live with one!"

www.our-sma-angels.com/elizabeth

Living with Spinal Muscular Atrophy - Many Changes in our lives this summer

2010-09-01T19:18:00.000-07:00

Summer is winding up with some really hot days and fall is sneaking up close behind. Its been a good summer with lots of emotions and changes in our lives. My grand-son Reed graduated from high school and Rachael my grand-daughter graduated from eighth grade . Reed went to Basic for the National Guard.We drove a total of 4600 miles for a trip to Stanford and the FSMA conference with the help from two organizations. We went to Minnesota and stayed with Drew and his family. We saw the Doebberts while we were there. Drew, Sophia and Lizzy went to the American Girl Doll Store restaurant. We had a fabulous time while in Minnesota. Good people, good time and good food!!

We went to Madison ,WI for muscle clinic. Faced the fact that Elizabeth might need spinal surgery. That was a hard to deal with but I have a little help stretching Lizzy now from Christen.
We also have 2 other professionals help us with helping Lizzy that does MF release and swim therapy. They all agree Lizzy needs to get in her stander daily to help her more. Lizzy breaks out in a rosy rash and holds her breath and says she can not breathe when we put her in it. Truly, she does really its just she wants to stay on her computer all the time. She has gotten really good at doing this sort of thing when she does not want to do something and manipulating us!! Well .....she has had almost 7 years experience and knows how to control us!! We are trying to avoid surgery she needs to cooperate!!

Lizzy saw DR.Hough today for the very last time today. He told her she needed to wear her knee immobilizers , Hand splints, elbow splints( when she gets them) and get in her stander.. He calls her "his miracle." That is where we get the our slogan. " We believe in miracles because we live with one!"
She came home and guess what? She did not fight me putting her hand splints on and her knee immobilizers on!! I saw him too. Probably, going to cost me a small fortune paying his bill but he gave me a shot that will get me through the next 4-6 months with out pain in my thumb and my allergies. The only problem is my appetite will insatiable, I will be over emotional( Imagine that) my face will be beet red for about a week, I will not sleep for a few days but not to have pain it is worth it!! It will help my back also. So, weighing out the side effects compared to pain I will take the side effects!! So, I guess I will remain red faced, fat and emotional for awhile longer.
It will be so sad him leaving. Breaks my heart.

Lizzy is sitting here singing county to the show on TV. She loves country. She was on her computer heard Kid Rock shut her computer off and said okay" I am done I want to watch TV. When she was at the MDA Telethon a few years ago when she was the Good Will Ambassador for central IL and getting a treatment with her silk pjs on she heard Kid Rock on the TV at the hotel and was so engrossed in watching him. She loves to sing so much. She is watching him and has not moved a muscle!! Its like she is in a trance.

Well, they have finally set the date for Elizabeth's Benefit. The committee has agreed on October 23 at the Crystal Palace in Pontiac,IL Kids benefit part starts at 2pm . Many things going on. the benefit is from 2pm -1am then they are doing a dinner , 50/50 drawing, Auction etc. The donations from local businesses have been rolling in. Its amazing!! There will be a country band and this is going be so great! I am so excited its going to happen!! This benefit will help so much with all the things Lizzy needs so badly and help with the doctor visits!!

Thanking for keeping updated on us!!

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

Living with Spinal Muscular Atrophy - Expectations

2010-08-29T21:20:00.000-07:00

I was talking to a good friend today and we were discussing gene therapy. We were discussing our expectations of the treatment for the kids that are not newly diagnosed. The older kids. We know its not the cure for older kids but it will enhance their quality of life. He wants to see his daughter that is a type 1 ( like Lizzy) be able to sit up and be able not to have to use the bipap. My expectations for Lizzy are that she able to sit up in her power chair all day and eat via g-tube. Sounds like small things to the general public but.... to us these would be HUGE gains.
Do I think Embryonic stems cells will cure SMA? I never believed in it .I do believe in Gene therapy. Yes, I do. I believe it will help so many kids and many other diseases. I was a listener I have never ever said I was a believer in Embryonic stem cells as a cure for SMA.

Lots of negative things being written about gene therapy. Please continue reading . This was posted by a good friend of mine on His facebook wall. Its very informative and helps you understand what is going on. I had to share this:

Here is the article that was posted from Slate:

http://www.slate.com/id/2264401/pagenum/all/

It comes on attack at many levels showing failure, but if anything we have learned that science takes time, patience and hard work. This article was written not by a researcher but by a journalist. The Author of this article was Emily Yoffe.

She was criticized by The Daily Howler for writing about a theory based largely on numerical evidence despite having recently written an article about herself titled "The Math Moron" in which she revealed that she tested at a first-grade level in mathematics.

In regards to SMA I think it is preferable to stick to scientific articles regarding the state of research Here is a well written scientific article posted by the Howard Hughes Medical Institue:

http://www.hhmi.org/news/jessell20080725.html

This article clearly shows the complexity of Embryonic Stem Cell research in the area of Motor Neurons. The body is not made up of just 1 generic Motor Neuron but hundreds of specific types of motor neurons that need HOX genes and FOXp1 to make the vast array of Motor Neurons. A science that is still in its beginning stages. Once these are figured out the next step is to figure out how to "rewire" the circuitry in the human body. Each of these Specific Motor Neurons Control different types of muscles. We have yet to prove that we are capable of innervating a motor neuron. To make a full signal between spine and muscle. We are years away from making this a viable treatment for our community. This is an important field and the research must continue and improve over the coming years.

For the Gene Therapy it is a much more immediate venture. There are questions on the "window" of treatment. These questions can only be answered via clinical trial. There is so much unknown about the motor neurons that it is impossible to answer. If the motor neurons are dormant then quite possibly they can be revived using the Gene Therapy. If there is a motor neuron loss then these will have to be replaced. A typical non-sma person will loose 30-40 percent of their motor neurons over the course of their lifetime. Yet they continue to ambulate in later years.The hope is that even if there has been a loss, the remaining motor neurons can be strengthened from the current state they are in. A realistic hope is that someone like Sophia may be able to breath on their own without mechanical assistance or possibly sit up. That is realistic. To think that she is going to be "normal" and run around like other kids is probably not. So many other things have happened in her body that other therapies and treatments would certainly need to be done. ie hip dysplasia. The Gene Therapy has shown the greatest results to date on the SMA type 1 mouse model. Far superior to any other drugs or therapies. In addition the results have been extremely well in larger animal studies which are much closer to humans. Lastly these results have been repeated by 3 different independent labs using similar approaches. These findings are nothing short of remarkable. When information is given out by researchers it is important to understand about their backgrounds. The Burgess Labs at OSU have been responsible for:

1. The Carrier Screening test for SMA

2. The Genetic Diagnostic Test for SMA

3. The original SMA mouse model (it is still the most popular mouse model used in SMA research)

These researchers have an incredible understanding of Spinal Muscular Atrophy and have already made significant contributions to the advancement of our disease

I have received 2 quotes from these researchers regarding their take on the posted article:

"We have been asked to comment on the story "The Medical Revolution: Where are the Cures". Indeed there have been promises in the field of biomedical sciences that have offered cures within 5 to 10 years. There is a growing list of failures based on those promises as this article highlights. To counter, medical research and understanding of complex diseases have expanded exponentially based on these studies. What these failed studies have shown remarkably clear is that diseases such as Parkinson's, Alzheimer's and Huntington's are quite complex and that a cure may not be as simple as taking a miracle pill. One may say that this research has been a waste, but if one looks at drugs, procedures and therapies that have been developed based on the research, one can see advances to patient health. For example, there are new procedures in Parkinson's Disease that counter the disease for many years. Additionally, more potent drugs have been developed that control the disease as well. Parkinson's has not been cured, but there are new procedures and drugs that have made significant changes to the disease. Certainly more work needs to be done as Parkinson's patient's continue to experience suffering due to their disease. An outstanding article from Time Magazine gives a clear look at the development of heart transplantation, where the field has made outstanding advancements.

see: http://www.time.com/time/health/article/0,8599,1939493,00.html

We are currently moving a translational gene therapy program forward for Spinal Muscular Atrophy. The results in our pre-clinical studies have been very promising. This has led us to rapidly, yet carefully advance studies to larger species to evaluate safety. We have assembled a working group of other scientists and clinicians that are collaborating to move this experimental therapeutic forward. We are actively moving the program to approach the regulatory agencies including the Food and Drug Administration. Based on our pre-clinical studies for efficacy and safety, we are encouraged that the therapy is safe, and targets the cells (motor neurons) that we are intending. The SMA community and us realize that this is an experimental therapy and will be tested first for safety and evidence for efficacy in small groups of human studies which is the translational process that any drug, therapy or procedure moves through. Everyone shares in our hope that therapies to improve the life of SMA patients will be developed and we remain committed to working to advance our studies.-Dr. Brian Kaspar

The Medical Revolution: Where are the Cures".

The article describes set backs that have occurred in particular in the field of gene therapy and stem cells. It is not a surprise that there will be set backs in the development of any new therapies. However this should be placed in the context of more conventional therapies such as drugs also not being cures or having major impacts on the diseases mentioned. This begs the question as to what therapies should be followed surely it is the lessons we learned from the approaches and whether the problems can be resolved that is critical. In the case of gene therapy a number of issues have been resolved with the AAV vectors the true test is when it is effective in a clinical trial. What are the issues first it appears wise to focus on a treatment rather than a complete cure as this is more likely to be achievable. The author mentions a series of disease but there are a number of differences in the cases presented. In the case of Parkinson’s for instance the first question which arises is the similarity between genetic forms of the disease and sporadic cases is the defect and the components to be fixed the same in all cases? We really cannot be sure and it is most often the case that the therapy is tested in a genetic model. So in the case of spinal muscular atrophy it is clear that reduced levels of SMN cause the disorder with milder patient having more SMN. So both in the mice model of SMA and in humans reduced SMN levels cause SMA. Therefore the same thing is being tested in mice and eventually in man. However an important consideration in SMA therapeutics is when the SMN levels need to be increased to reverse SMA if the clinical trial design differs from what is tested in mice then you might get different results. What we know for the relative severe SMA mice is that early postnatal introduction of SMN has a major impact on the survival of the SMA mice. So how does SMA fit into the landscape of the article? First it is clear that the genetics SMA is an advantage in that you know the cases you will be treating are due to reduced SMN, second the remarkable development of Adeno Asscoiated vectors which can get to the required target clearly resolves the delivery issue at least in mice (The AAV vector can also target the required cells in larger animals), third the treatment shows efficacy in the SMA animal model when delivered early indeed gene therapy has been the most effective treatment in these animals to date. In SMA we have three major therapeutic avenues based around increasing SMN 1) drugs that stimulate production of SMN from SMN2 we should encourage better drugs that stimulate a 3 fold increase in SMN levels, Antisense oligonucleotides that encourage SMN2 to produce sufficient SMN but are more difficult to deliver to the required cells, and AAV gene therapy. We are actively pushing forward with the Kaspar laboratory in moving the proposing gene therapy approach to clinical trials. Until one or even better more than one of these approaches works in SMA patients we need to push forward with these potential treatments and develop them further using any failures that might occur to find the method of therapy that does work. -DR. Arthur Burghes

We believe in these researchers and the contributions they have made and continue to make for our community. We will continue to educate our community and provide you with the scientific research that is happening regardless of the politics. I remain very optimistic of the real promise that is truly right around the corner.

"We believe in miracle because we live with one!!"

www.our-sma-angels.com/elizabeth

Living with Spinal Muscular Atrophy- "Remembering John Wayne"

2010-08-29T19:18:00.000-07:00

Sleep is not something I get a lot of . I think I have averaged 5 hours sleep a night for the past 7 years. So, last night after Lizzy's treatments, stretches ,prayers and getting her all set up for her beauty sleep I tried to go to sleep but as usual my mind was not letting me. Watching all about wedding cakes and then flipping through the channels I found a John Wayne movie. I was excited. I used to watch John Wayne movies when I was a kid. John Wayne reminds me of my Grandpa Reed who passed away many years ago. I miss him so much and and Grandma Reed. I loved being with them as a kid. My grandpa used to shake his head every time I got myself into trouble while staying with them. He used to call me a "Pistol" . I used to ride horses, tinker around in the machine shed, help mow , gather eggs and feed the chickens etc. The smell of coffee and bacon used to linger in the morning air when I would wake up at their house. I love that time in my life. Wow, time does fly by. Wish I could go back if even for an hour or so.

Its been a good week-end. Quiet hardly no phone calls every-one gone Saturday and mostly today. Just Lizzy and I . Its been peaceful. It was back to HOT weather. Loved the weather last week. Too good to be true/

Dana had to drop Reed back off at the base and she lost it. She cried most of the way home from Kentucky. I know it hurts me too he is so far away and we are not able to talk to him or see him when ever we want. Dana will be okay. She is lot like her Mama. Shedding tears used to be hard for us until are babies grew up. Seems like I shed more tears these past few months more than I ever had.
This week we see DR.Hough for the last time on Wednesday. I am sure I will shed more tears on that day too.
Things are changing fast.
I want to live where I enjoy the weather and Lizzy can enjoying going outside almost every day. Where that is..... far away from here.
I was told today by my stepmother if I move away she will sell my inheritance!! She said she was at a sale today and she could get big bucks for her China Cabinet that I have always wanted . That does not count what was inside!! LOL I can not believe she said that!!
Every thing is back to normal almost.
We are proud of you Reed Michael Huette.
I need to go find another John Wayne movie.
"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth