Five years ago today.... (Spinal Muscular Atrophy Type1)

On May 11, 2004 we learned the cause of Lizzy’s weakness and our lives changed forever.
Spinal Muscular Atrophy, SMA. Elizabeth was diagnosed as type 1, or Werdnig- Hoffman Disease. Children diagnosed as type 1 are not expected to survive past their second birthday without extensive respiratory support and despite aggressive care it doesn’t guarantee survival, nor does survival come without complications and heartache.
Christen was told to take her daughter home and love her; she would most likely die before she turned of age one, two if lucky.
I dropped to my knees screamed as if someone pierced my heart with a hot knife. How could this be? How could a child so beautiful and full of promise be handed down a death sentence? How could we even consider just letting Elizabeth die? How could we not try to prevent the inevitable?
I knew then that I could not take this news lying down. I HAD to do something, anything. I wasn’t willing to let her go and I was not going to sit back and wait for her to die. Were these doctors crazy??
While everyone else grieved I went online and searched the internet. I was on a mission and I knew that it was up to me to save our little girl.(Reprinted from Elizabeth's Story In Jennifer Trust magazine)

I found the Stanford trial that DR. Wang had started that Lizzy was accepted into. She was put on Hydroxeurea in the drug study. The drug helped stopped the progression of Lizzy disease. Dr. Wang was so great to us during the trial. He gave us Hope.
I found many families that aided in support and proved to me that these kids can live with the right care
I think the hardest part fo me to learn was to listen to parents/caregivers of these kids more than the doctors that were unfamiliar with SMA. You have been taught since a young age that your doctors know everything and you need to listen to what they say.
We had gotten machines for Elizabeth to help her stay well on borrow from Laura Stants (SMA Support) and FSMA until Elizabeth was able to get hers.
We went to Stanford and then a few weeks later after we got back we were on our way to see DR.Mary Schroth. The best Pediatric Pulmonologist (in my opinion) in the world for kids with SMA. She taught us how to use Elizabeth's borrowed machines. DR.Schroth and her staff at U.W in Madison, WI is the best ever for kids with Type 1SMA.
No respiratory therapist that worked for our DMEs here in this area in IL would take on Elizabeth case until she was 17 months old.
DR. Hough(Our family doctor) does everything he can do to get Lizzy what she needs to help her and believed in me after we started being so agressive with Elizabeth's care He actually tells me, If it was not for me Lizzy would not be here." He is very proud of her. He does everything he can do for her and fights her insurance for the things he thinks she needs. He fought long and hard for the RSV shot but the battle was not won this past winter. He was very upset about that.

Lizzy is going to be six in September and doing great.
Her Papa actually can take her out-side now in her power chair and give her suction if she needs it. She can tell you what she needs. She plays with other kids and will now venture off across a room to interact with other children and come back for suction.
We still do not let our guard down with her but she has gotten much stronger and can tell you what she needs and when she needs it.
Her Amino Acid diet that is enhanced with donor Breast milk, her meds which is Hydroxeurea and oral Albuterol. She is one a daily respitory regiment which includes nebulizer treatments,cough machine the use of a IPV machine 2 times a day and coughs and suction as needed . She sleeps at night on bipap and if she is very sick is also on bipap. I stretch her legs and arms daily. I use massage oil and rub her down while stretching her. I do mouth exercises and do what ever it takes to keep her strong.
We need to get her a pool some how because she needs swim therapy so badly and was doing great with it. Then her PT said she would no longer see her. She has no OT and PT anymore because their are not any in the area that are willing to take her on as a patient. Hopefully, we have one that we are working on getting we have to pay out of pocket to for.
She is my heart and my life. To see what struggles she has faced and done well makes me so proud of her. She is am amazing child.
Its been a journey that has taught us so much, met several wonderful people and us made my faith stronger. She has changed my life.
Nothing is impossible if you believe in miracles.

I ask you now for prayers for another family that their brave little guy earned his wings today. His name was Logan Harman. Fly high Little Guy, fly free of disease.
I hate SMA.
www.our-sma-angels.com/elizabeth

http://www.youtube.com/watch?v=2lP5bYdmuWE New Video of Lizzy

Finally Spring! (Spinal Muscular Atrophy)

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

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

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

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

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

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

Types of SMA


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

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

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

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

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

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

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

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

Spring... but precautions (Spinal Muscular Atrophy)

Elizabeth is getting out-side in her power chair more since it finally quit raining this week. We have a carnival that sat up a block from our house. So, her and her Papa have been driving up there. We will not let her go up there when its open because too many people. She drives around and just looks. She thinks it totally cool that she can drive right up there with Paul. She gets all excited pacing in her chair back in forth from living room to dining room waiting for him to take her up there. Twice today they went up there. Too funny seeing her act so much like a kid. Tonight she played with Blaze outside next door in their yard. Seeing this just warms my heart. It gives me so much joy. Lizzy is so much stronger and doing so well.
Christen knocked her back out on Sunday at the Corbyn's baby shower. Her sister Dana and her were lifting Lizzy's power chair out of the van since we do not have a lift. She refused to go to the ER. Well, on Monday she had to go see DR.Hough and after a 20 minute lecture I guess on why she should get a lift and not lift a 500 pound power chair he popped her back right back into place and she has been in some pain this week but seems to be better today. We have a lift coming here soon from a very dear person that has one we can have!! So, hopefully here soon we will have one. Thank you Amanda and we will be there very soon to pick it up!!

Lizzy is going to hopefully be starting myofascial release here soon with our neighbor that is a PT. I hear its great for SMA and also back injuries. We have no PT or OT and do all her therapies every day with me. I am not a professional and she needs swim therapy.OT and PT but we are not able to get it here any more.

What Myfascial Release?
Myofascial Release is a very effective hands-on technique that provides sustained pressure into myofascial restrictions to eliminate pain and restore motion. The theory of Myofascial Release requires an understanding of the fascial system (or connective tissue). The fascia is a specialized system of the body that has an appearance similar to a spider's web or a sweater.

Fascia is very densely woven, covering and interpenetrating every muscle, bone, nerve, artery and vein as well as all of our internal organs including the heart, lungs, brain and spinal cord. The most interesting aspect of the fascial system is that it is not just a system of separate coverings. It is actually one structure that exists from head to foot without interruption. In this way you can begin to see that each part of the entire body is connected to every other part by the fascia, like the yarn in a sweater.

Fascia also plays an important role in the support of our bodies, since it surrounds and attaches to all structures. These structures would not be able to provide the stability without the constant pull of the fascial system. In fact, our bones can be thought of as tent poles, which cannot support the structure without the constant support of the guide wires (or fascia) to keep an adequate amount of tension to allow the tent (or body) to remain upright with proper equilibrium.

In the normal healthy state, the fascia is relaxed and wavy in configuration. It has the ability to stretch and move without restriction. When we experience physical trauma, scarring, or inflammation, however, the fascia loses its pliability. It becomes tight, restricted and a source of tension to the rest of the body. Trauma, such as a fall, whiplash, surgery or just habitual poor posture over time and repetitive stress injuries has a cumulative effects. The changes they cause in the fascial system influence comfort and the functioning of our body. The fascia can exert excessive pressure producing pain or restriction of motion. They affect our flexibility and stability, and are a determining factor in our ability to withstand stress and strain.

The use of Myofascial Release allows us to look at each patient as a unique individual.

We have talked to another family that uses this on their kids that have the same disease as Elizabeth and they are doing well with it.

I saw on the news tonight that swine flu is in Chicago now!! The closed 12 schools!! OMG... This is so scary. We just had got over our " Winter Bubble" now we must put masks on Lizzy again if we go into the public.

Preventing the Flu: Good Health Habits Can Help Stop Germs
Fact Sheet:

Avoid close contact.
Avoid close contact with people who are sick. When you are sick, keep your distance from others to protect them from getting sick too.

Stay home when you are sick.
If possible, stay home from work, school, and errands when you are sick. You will help prevent others from catching your illness.

Cover your mouth and nose.
Cover your mouth and nose with a tissue when coughing or sneezing. It may prevent those around you from getting sick.

Clean your hands.
Washing your hands often will help protect you from germs.

Avoid touching your eyes, nose or mouth.
Germs are often spread when a person touches something that is contaminated with germs and then touches his or her eyes, nose, or mouth.

Practice other good health habits.
Get plenty of sleep, be physically active, manage your stress, drink plenty of fluids, and eat nutritious food.

***Fact- You should always practice these things no matter who you are to keep from spreading GERMS/Illness to others!!

Many Prayers for Jake(Who is in the hospital) , Sophia(who has been having issues this week, Roman who (just had surgery) Molly, Grandma Roz, newly diagnosed families and for all the people who have gotten sick with the swine flu.

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

Weight gain and growing(Spinal Muscular Atrophy)

Lizzy had a check up here yesterday and she is 29 pounds!! and 44 inches. Now, just think about this ..... less than a month ago she was at Madison and weighed 27 pounds and was 41 1/2 inches!! I am a thinking that its the donor breast milk from the donors that have been helping us out getting Lizzy what she needs. It seems she is stronger and just doing awesome. I am telling you I am a " Believer in Breast Milk for Type 1 SMA babies/kids " Lizzy is the "proof" It is the reason Lizzy is gaining and doing so well. I had upped her when she was sick to 20 ounces then had her on 16-18 ounces a day after that. I just cut her back a bit because since October she has gained about 7 pounds. Amazing. That you to all wonderful Mom's that have donated your Milk to Lizzy. I think its the most wonderful gift you can give and to share it takes a special person

Lizzy has an IEP coming up. We have a new coordinator for special needs here so lets pray they let us do the video conferencing.

Paul still has not got a job and we have applied EVERY where for jobs for him and not too many places are interested. I am not sure why. Is it his age? He was a great worker. He is driving me insane being home all the time. Its like I lost all my rights to watch any shows on TV. Him and Brandon play that Play X box 3 (Brandon Lizzy's Dad) and Its history channel 24/7 or combat games onlines. So, I do not get a chance to get online much or watch TV. Thank goodness its spring and we can get outside.

Many prayers for the newly diagnosed families , sick kids and ones that have lost loved ones. May God give you the strength you need to get through the days ahead.

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

CCK week-end (Spinal Muscular Atrophy Type 1)

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

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


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

Lizzy slept all the way home. She never naps usually

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

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

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


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

Spring or Winter? (Spinal Musular Atrophy)

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

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

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

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

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

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

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