A Bucket List or JUST Living Life with Spinal Muscular Atrophy Type 1

I keep hearing over and over about the father from Texas that wrote the blog/bucket list for his baby girl that was diagnosed with SMA Type 1. I tried to keep quiet and I just can not. I sent him a message but I got no response.
The questions that keep bothering and having me wondering where is all the info they got coming from? I felt sorry for them.  but......   as parents do YOUR HOME WORK!! Granted SMA Type 1 is a terrible disease but there is on going research and research drugs available. These kids can have a good life if the parents are proactive in their care.There are doctors like Schroth and Bach that specialize in helping these kids live. If the parents choose palliative care over letting their child live that is their choice, but people let it go!! Not a choice I would make ....but,  I have heard it every where about these people! They were VERY misinformed. Babies are not born with expiration dates.

Lizzy was similar to their baby strength wise and their baby girl might be a bit stronger because they said "she losing strength at few months old!' Lizzy lost her head control shortly after birth and was very floppy. I saw the news report video. She is a little beauty.

Its up to the parents to make that decision to work to save their baby or just let them die.
The controversy over palliative care and being proactive in the care is why people are so upset.



I do want to add that there is a many booklets on care of children for SMA at the FSMA web-site
http://www.fsma.org/FSMACommunity/Publications/  You can download them on your computer and then print out the info.

http://jcn.sagepub.com/cgi/content/abstract/22/8/1027   International Care Of SMA


We try to do as many things as we can with Lizzy but we are also  careful. We sanitize everything, not let her around sick people, she wears a mask while going in/out the hospital for PT/OT and speech and no one can touch her. Plus, every one needs to sanitize their hands and no one in her face. We just use common sense.

We chose to love life and live each day and do everything we can do make Lizzy's life as happy and healthy as possible. She says exact quote " I love my life!"
I can not make a bucket list for Lizzy. She has to do that herself when she is older. Lizzy is 8 yrs old with SMA TYPE 1 also.

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

MY BUCKET LIST
To give Lizzy the healthiest and happiest life possible
To help as many parents as I can with the proper info about care of kids with SMA
To see a treatment to cure SMA in my life time
To live each day and enjoy life
To make sure my family is happy

This is Lizzy - Living with Spinal Muscular Atrophy Type1

For those of you reading this for the first time this is "Lizzy". She turned eight years old on Sept. 29, 2011. She has Type 1 Spinal Muscular Atrophy. She was a very floppy baby and quit holding her head up shortly after birth. I knew there was something wrong very early because she was so weak.
Lizzy was given a death sentence at her diagnosis. Her parents were told when she was 7 months old" that she would die probably before her first birthday longest around two years old. " Lizzy is our miracle, our little fighter and proved them so wrong.
I ( her grandmother/caregiver) did NEVER give up hope or did I ever believe I could not find ways to help her.
I found the Stanford Hydroxeuyra study with main researcher DR. Ching Wang. Christen called them right away.  Lizzys was accepted!! That was our first glimmer of hope for Lizzy's future. We traveled a little bit more than a month after her diagnosis out to California. It was the first time any of us had ever flown and Lizzy was enrolled in Phase 1 blind study. We flew out there monthly. Then every 2 months , then ever since and until a few years ago we drove twice about a year apart. Lizzy still gets the med but from DR. Mary Schroth at American Family children's hospital in Madison, WI.
 Lizzy starting seeing DR. Mary Schroth that is in our opinion the best pediatric pulmonary specialist  for SMA in the whole world. She told us what we needed to do to save Elizabeth's life. The first thing was her respiratory protocol and taught us how to use a cough machine. Next, was a Gtube surgery( Gastrostomy feeding tube insertion is done in part using a procedure called endoscopy. For information on how this procedure is done, see: Esophagogastroduodenoscopy (EGD).
After the endoscopy tube is inserted, the skin over the left side of belly (abdomen) area is cleaned and numbed. The doctor makes a small surgical cut in this area and inserts a small, flexible, hollow tube with a balloon or special tip into the stomach. The doctor uses stitches to close the stomach around the tube.) and Nissen( During the fundoplication surgery, the surgeon improves the natural barrier between the stomach and the esophagus by wrapping a part of the stomach known as the gastric fundus around the lower esophagus. This prevents the flow of acids from the stomach into the esophagus, and strengthens the valve between the esophagus and stomach, which stops acid from backing up into the esophagus as easily. This procedure is often done using a laparoscopic surgical technique. It can also be done as traditional (open) surgery) .
Elizabeth did well with the surgery. It was done on her 10 month birthday.
Elizabeth had a few illnesses and was hospitalized when we could no longer take care of her at home twice after that but after she was 17 months was not hospitalized again until she was 7 years old with RSV and in March for a suspected HMPD virus where she was intubated but recovered quickly.
First thing is I want to mention we do not have a lot of money but we have found ways to help Lizzy and have a wonderful support system with other families that deal with the same thing as we do.
Lizzy will tell you herself" She loves her life!"
She started the AA diet at age 1 year old and around age 2 started getting donor breast milk because she had a hard time absorbing fat and stayed the same weight and would not grow for a year. The breast milk also helped her health and made her stronger.
She is eight years old as I said. She has a tutor that comes twice a week , Has swim therapy , and has Myofasical Release. She has a power chair and hopefully gets a new one soon because this one is getting too small and her needs have changed. She is on the computer quite a lot and enjoys life.
Lizzy lives here with her mom, grandfather and me her (caregiver and grandmother). We have a old pit bull dog Pepper and two fish.
I always believed in God and Jesus but since Lizzy was diagnosed I had a "spiritual awakening" I guess you can say and let God take care of us. Prayers , HOPE and believing in miracles get me through each day besides Elizabeth's smiling face. Many times Divine intervention have come in to play and help us through the roughest times.

More about Elizabeth  http://www.our-sma-angels.com/elizabeth/
the Amino Acid at  http://www.aadietinfo.com/
Research for SMA , help and support  http://www.sophiascure.org/
research for SMA http://www.miracleformadison.org/
SMA Support - http://smasupport.com/
More links  http://www.fightsma.org/
http://www.fsma.org/
http://www.smaspace.com/
http://www.our-sma-angels.com/b4sma/

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

Moving Right Along - Living with Spinal Muscular Atrophy Type 1

It seems Lizzy has bounced back and back to her norm. "Sigh of Relief" This last illness scared the bejeepers out of us but she bounced back quicker than any if us anticipated.
We went to church yesterday with the family and Lizzy actually loved it. Caitlyn and Corbyn were baptized and Dawn joined the Lexington Methodist Church. So, we may be going every week. Since, she goes to bed earlier and up earlier it was not hard to get her ready to go and  on time. We actually were early yesterday. Isn't that amazing. LOL  I think we will be going to our local church though. I belong to the Methodist church about two blocks away so we could even walk and no loading the van would be necessary. We shall see how this goes.
As, I stated we have went through some changes since Lizzy hospital stay. Christen is home more and helps with Lizzy's nebs at night while I get some of my stuff done. That started over the weekend. Its seems to help me get caught up on some of the stuff I have to do too. Only problem with the going to bed early is now my eyes pop open at 4:30am every morning!! Lizzy wakes up and says "Nina pleeeease lay back down I am not ready to get up!" So , I lay awake for a few awhile and sometimes fall back to sleep but not often.
Oh, let me tell you about my crazy hair mess up over the weekend. Okay, I have not been able to get my hair cut in months so I have this natural curly crazy hair that is untameable. And .... this natural curly is close to looking like Bozo at the moment. A thanked my Dad yesterday for that gene. Well,  since I went through all the holidays with crazy hair that was turning white around the face I decided to color it. Well , The first time Saturday it came out close to a Hot Pink. Yeah, Hot pink. So, got the color I usually use for touch up and it turned Bright Red!!!!! oh my gosh I was so upset!! OMG imagine.... Going to church with a bright red mop on my head!! Christen laughed and laughed. Grrrrr Any way, I sent her out again to get me a  5R COLOR that my beautician recommended awhile back to fix one of my crazy hair color disasters. It worked but my hair is so long ( for me) . I hate my hair long because its so unruly. My kids like my hair longer and told me I could use a curling iron. What ever? I usually do not have time to wear make up let alone use a curling iron. Since, I no longer can afford the beautician I guess I cut it myself, curl it or cover it with a huge hat.  I really do not like white hair on me so I need to be careful with hair color.
My plants I have started in my basement with hydroponics and some with grow lights are doing well!! I have to transplant the hydroponic tomatoes this week and set outside during the warm days so they can grow tomatoes. Beautiful looking. I have flowers that are also doing well that have been under the grow light that are doing well too!! I need to get all those transplanted and start more. I love growing my own vegetables and flowers.
Next week Lizzy finally gets her new TLSO!! I have her back to what is was before her illness. That took time but we got it back!! Then working on getting her a new collar since she out grew her last one. Then. she has a wheel chair eval for first week in May. Hopefully, the power chair route will not take that long. Then she will be all set up for summer.
Sorry if I sounded emotional last few posts. This last illness took a huge toll on all of us and we did not really know how it was going to effect Lizzy but..... She is back to herself with a tad less whining!!
Believe in the power of prayers. It works. Believe in miracles because they are out there too!! Just look at Lizzy!!
Thank you all that prayed for Lizzy and helped during this last illness!! You are the reason she has bounced back!!  Love you all!!
"We believe in miracles because we live with one!"

Things are changing - Living with Spinal Muscular Atrophy Type1

Lizzy is doing a lot better.
 Its was strange but long week,  last week.
Christen is on" HIGH STRESS" level. She will not let Lizzy fall asleep with out bipap and makes her go to bed hours earlier than before. I sleep with Lizzy and do  all her treatments so its been a hard adjustment for me. I get my work done around the house when Lizzy snoozes on the couch a hour or so before bedtime. That, was the routine. Lizzy will not let Christen do her treatments after we got home from the hospital. So, I am getting way too much sleep for me. My whole life its been 5-6 hours a night and I was ready to get  up. In turn I am tired all the time now!! I get less done and I feel like I am being controlled by my daughter and that does not sit well with me. I am also on STRESS ALERT status too
My younger sibling Milinda is home trying to get her father ( My stepfather) in a nursing home. She has NOT discussed anything with me at all. She had plans to put him in the nursing home and get a trailer and take EVERYTHING back to Kentucky with her. That would of been fine if she did not have 4 other siblings and our mother. I am not going to comment too much on that situation but...... I did tell my mom I wanted her to make sure I got pictures.  I have grown older after I was given things from my grandmother when she went into a nursing home and the items were removed from my car by my stepfather years ago I decided at that time material items do not mean much too me. Its family that means more and memories.  So, I am sitting back and watching to see what goes on with my mom. I just want her to be taken care of and get what she needs. I guess they are putting my stepfather in her room at the nursing home and mom is not happy about that at all.
Easter was good. We went to Dawn and Jeff's. Lizzy did very well. It was a good day.
Paul has still not been able to get a job and went to see a lawyer today about his social security denial. He said he will take his case but its going to take some time...... He has to refile.
I am not sure what is going on with Christen after Lizzy's last hospital stay but she is staying home more. She is emotional and keeps worrying about Lizzy. Its like she is over careful with her now. Lizzy does not like it either. We are thinking because her back got so bad in the hospital from laying on the one side watching the door Lizzy might need to spinal surgery this year. Something I do not want to think about. Her lungs are fine but getting her back to what it was before this past illness has been hard.
Lizzy is getting new power chair eval the first of May. I am so excited. She has out grown hers.
So many changes going on. Not sure if they are all good but life as we knew it has changed forever.
Many prayers for Lizzy's BFF Sophia Salus. She has been sick.
Thank you for all the prayers they worked and keep them coming!!
Thank you all for the wonderful cards and gifts while Lizzy was in the hospital!!
You made us feel so cared for and loved!!
" We believe in miracles because we live with one!!"
www.our-sma-angels.com/elizabeth

No Place like home!! Living with Spinal Muscular Atrophy Type 1

We got Lizzy home from the worst illness she has ever had on Sunday. Thinking back over how sick she makes me wonder how we went through this or actually her being so brave and fighting all the way. Lizzy "loves her life" she says .Lizzy got really sick Tuesday March 20 in the morning and plugged . It plays over and over in my head the events of that day. Bringing her down stairs while she was on bipap and getting her on the stretcher with my house full over EMTs and Firemen was the least of my worries. Soon, as we got her on the stretcher she had this look in her eyes, turned blue actually purple and was down for a few minutes. Christen and I were like two crazy woman. I grabbed the cough , with divine intervention and the help of angels I was able to get the plug up .  I got her back . "Phew"  I knew I had that divine intervention because you just knew there were presences here because you could feel them. It was like her whole face was purple before we got the plug out. I was barefooted walking down the ramp to the ambulance coughing her every step of the way to keep her air ways open. Oh My gosh......... we did it we got it up. The EMTS backed up and let me do what we had to do. It was amazing. A voice from behind said" Let them do what they have to do because I was here the last time and they know what they are doing"  Most of them we had talked to previously but..... I really never thought they would back up and not try to take over but they did.
Thank you God!! Then after we got her to the ER the nurses got me some socks. How embarrassing. Any way Lizzy was medflighted to UW.
Lizzy worked hard from Monday to Friday getting junk out every two hours. Blood pressure was high. Friday is the day I think I aged another 10 years in a matter of seconds  because of the Respiratory Therapist that was doing Elizabeth treatment on Friday. Well, the RT started getting a plug out if Lizzy and would not let Lizzy recover. I was screaming at her.. Lizzy was dropping dropping and that old Bitty would not listen. She was focusing on the junk by DEEP sectioning with out letting her recover. Lizzy was dropping to the 40s O2. I was then removed from the room and Lizzy was intubated. We know Lizzy had to be intubated but not the way she was intubated. She should of not been put through what she was put through. She got better almost immediately after the intubation but she watched the door for the three days to make sure that  RT would not come back to her room ever.  More to the story but..... not worth getting myself all upset. Not something a eight old should have been put through. Any way, the angels worked hard that day to get Lizzy through that also. I believe Lizzy has somethings to do on this earth and it is not her time to leave.
She is a very special child and she has God's work to do by helping other families.
I love her so very much it hurts my heart to know what she went through. She will not talk about it and says "she does not remember only.... it did not hurt".
She kept all the docs and nurses laughing at her with the comments she would make. Like, "Okay Nina Get my nurse to get my RT because I have a rattle right over here!!" She also was asking for salami and pickles!! She is such a hoot!!
After, she was extubated  she started talking that day and did not stop until she feel asleep that night.
Lizzy had a very quick recovery, What started out what seemed life threatening illness turned to healing and got better every day.
 I AM SO GLAD we are home.
Thank you all for the prayers!!!
She has had a great week so far!!
 "We believe in miracles because we live with one!"