Tuesday, May 25, 2010

Update, Graduation and Upcoming June adventure - Living with Spinal Muscular Atrophy




                                                                

Lizzy is not happy in Pic#2 s . She did not want her picture taken.
I have been trying to write this since Last week.   Its been busy around here. Lizzy is getting over a sinus infection.  She actually told me she had one. She is doing okay. Sassy as ever!! Corbyn is here every week for a day or two and Boy is he BUSY!!! Reminds me of Reed Michael at that age!!


Reed Michael graduated last Friday night....
 ( Taking a deep breath and thinking where did the last 18 years go?). He was my boy I never had . He is the grand child that started calling me "Nina" . I was 33 and a grandmother. Yeah.... 33 !!  We helped raised him. His Mom Dana was 15 years old when she give birth to him. The day we found out she was pregnant I gave her two options . She would  raise baby with my help until she was able to do it on her own or her Dad and I raise the baby. No abortion ,no adoption. Plain and simple.  This baby was blood and he was staying with us.  No matter what his "sperm donor" wanted or his parents.  These were the only choices that were offered my daughter by her father and I . After all Dana was only 15.  She also does not believe in abortion.
 He was a great kid. He was raised with my other kids.  Dawn, Christen and Jess say  he is like their little brother.   We all  made sure he was always taken care of.
Dana got her GED, worked at Wal-mart at age 16 and continues to work there and is in training for Assistant Manager . She did a good job with him.
Reed will be going into the National Guard in June. I miss my boy. I have not seen much of him since he turned into a teenager. Good luck to my boy you are my heart just like my other grand kids.



Rachael graduates from 8th grade tomorrow. Watch out world Rachael will be in high school. Four more year and she will be leaving also *sigh* where does the time go. This is a old pic of Rachael. She never sits still long enough to get her pic taken.

Less than a month we will be on the road to CA. I guess its just Christen. Lizzy and I this time as Jessica has backed out because she says she will be going to school. She was laid off last month. Rachael may go but her Dad is the person with the final say I guess. She will keep Lizzy occupied and the experience would be good for her but.... the question is. Will it be okay for my sanity?  We shall see won't we?

Elizabeth has been doing well on the Organic India Turmeric. It is so amazing how well it has done on the Lizzy's contractures behind her knees. Lizzy is only on 1 cap 350mg a day in her food mixture. No side effects what so ever.

Elizabeth's New bipap/Vent is waiting for NEW prior approval.  Our DME here denied it after it was approved  by insurance. So, we have a new DME working on it.

Elizabeth is quite excited about the upcoming calendar of summer events we are having. The trip to CA. She loves to travel. She will get to see Molly and Andy our dear friends. Spend time with her friends and meet some new ones. She is super excited about Rachael maybe going.
DR Wang will be PUBLISHED!! We love seeing friends at the conference.

She needs a new seat in her power chair. She has had a HUGE growth spurt and It seems not to fit her anymore. The Koala is a great little chair but the seat its too small for her. Not sure what to do about this one. I have contacted the vendors we have for her chair so we shall see.  I do not think we could get insurance to approve a new seat or chair. I have to do some research on this one.

Many prayers to Gaynor Family. Catherine's grandfather passed.
Many prayers to MJ and all the sick kiddos out there.
Prayers for us please on our upcoming road trip to CA!!

Thank you for every one that has been a part of our lives!!

If we ALL work together we can help save so many kids!!!

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

www.our- sma-angels.com/elizabeth
http://www.refresheverything.com/sophiascure Please Vote!!!
I was send this info below and thought I would share this. Very interesting!!

You may have seen that the government recently released its annual report on the quality of health care Americans receive. While there have been some improvements, the news was not positive:  hospitals still have work to do to put an end to the ongoing, but very solvable, problem of patients acquiring life-threatening infections in hospitals.

Patients, their caregivers, and health care professionals need to educate themselves on the dangers and what can be done to protect people from getting sick while in the very place they went in order to get well.

To help achieve that, Kimblery-Clark Healthcare has put together a website called "Not on My Watch" at www.haiwatch.com to educate patients and health care professionals. Their goal is to eliminate these preventable illnesses and their often tragic consequences.

I hope you will help in this effort, too, by informing the readers of Lizzy's Page - Living With Spinal Muscular Atrophy about how they can learn more about protecting patients from preventable hospital infections. I've created a useful site that you're welcome to check out and grab resources from:

http://haiwatchnews.com





Monday, May 10, 2010

Six years ago May 11 - Living with Spinal Muscular Atrophy








Six years ago tomorrow was a day that changed our lives forever. We could not understand how a beautiful baby was handed a death sentence from a neurologist that did not believe in compassion. He was cold ,cruel and gave us no hope for the future with Elizabeth in it.  She was not supposed to live to be two years old and lucky if she reached a year according to the neurologist. His advice was " Take her home and love her because there was NOTHING he could do for her" .

My husband and I never gave up on Elizabeth we knew we had to fight for our grand baby with every breath it took.  My dear Aunt Ginny that passed a few years back said to me" Jeanna, you are the strongest person I know you will find something to help Elizabeth . I believe in you"   That is all it took besides divine intervention. That small piece of advice has started us through our journey fighting for Lizzy. We had to convince her mom not to give up. With the help of DR.Wang, DR.Schroth   DR. Hough, many caregivers and parents we are six years away from that most devastating day. I do not know how one doctor could tear your heart out with words but he did.

Its okay now though the this day does not hurt anymore. Lizzy is thriving and doing so well!!

We have met so many wonderful people on our journey that began almost 6 years ago. We have learned to have, HOPE, faith and patience.

My great grandmother was a mid wife and I think sometimes I inherited some of her talents in healing and helping others. I knew I could help Lizzy. I knew I had to. I guess its sort of an Intuition. Intuition can be said to be a comprehensive grip of the principles of universality. I sense many things.  I sensed Elizabeth would survive and beat her odds. She is our miracle. She is our gift.


Thank you Laura Stants for being my sounding board, my fountain of info ,helping us get what we needed for Elizabeth in the first years and being my friend since. You help save her life with letting us borrow the v-pap and humidifier when were unable to get her the equipment here for Elizabeth. Thank you to DR.Schroth for teaching us what we needed to learn to get us where Elizabeth is at today. You go above and beyond any doctor I have ever known . You take your job personally. 
DR.Wang thank you for accepting Elizabeth in your trial. She never had movement in her legs until you.
DR. Hough thank you for being there for us and believing in us. 
Thank you for all the parents/care-givers that send me the supplies  or swap me supplies I need to keep Lizzy healthy!!!!!!
Thank you Mary for all your help teaching me about diet.  you too Steph 
Thank you Colleen for all you have done for Elizabeth.
Thank you to all my friends for being there for us and believing in us!!
Thank you to the organizations that help us get  what we need to keep Elizabeth thriving and doing well when we are not able to. 


Elizabeth says "She loves herself" that alone says so much.


I posted today, as tomorrow I want to just sit around and hold my girl all day. I love her so very much!!


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


http://www.refresheverything.com/sophiascure

Wednesday, May 5, 2010

It Gets Better Right? - Living with Spinal Muscular Atrophy


Its been a crazy last few weeks.  We went to CCK and as usual Lizzy loved it!! We got through the stomach flu . Never had dealt with that before with Lizzy but I got her through it.  Lizzy was denied the new Trilogy bipap/vent from Apria but approved by her insurance. Strange huh? How can you be approved by your insurance to get a vital piece of equipment and then your home care equipment provider deny it. Hmmm... How can that be?

We got back on track with Lizzy. Then, today she threw a plug. I knew something was up all night last night but she kept giving me excuses why she why her o2 was sating lower than normal. Not bad but not her norm. So, I upped her treatments today.  I will be going with my intuition next time, the little stinker.  She is learning to manipulate me I think.... but I think that is changing like NOW.

Saturday, Elizabeth was all excited the carnival was here and she got to go with her Mom and Dad.
Paul had come home from Dawn's house after doing some yard work not feeling well. Christen and I both asked him if he needed something to eat. He said "No, he was sick to his stomach, his fingers were numb and needed to lay down. He said" he feels like he has the flu." Which I thought was strange because the flu had been out of the house after we totally disinfected it and the incubation period is 48 hours.  Well. Christen and I checked on him and fine the first few times. Then, I went in his room checked on him and was non responsive.  I called Christen back home. She ran home. Brandon had Lizzy and then took her next door.  Lizzy saw the ambulance and was  worried . Christen called 911. With out adding all the drama of the day I will add the man was near death or a diabetic coma. His blood sugar was 19 . I had given him sugar on my finger under his tongue before that. I aged about 10 years that night.  He refused to go to the hospital . I will not go into all the details but tonight his sugar went to 39..... I am calling the doctor in the morning and when he gets home from school he will be going to the doctor. If I have to hire some big ol bikers to carry his ass!   Something is just not right. I just woke him up a few minutes ago and made him eat a peanut butter sandwich. This is really scaring me. He is such a stubborn man and he did not have the flu.
I am not up to all this. What is going on and why now? Is it just a adjustment or is it something worse?

Trying to raise funds for Stanford visit in June for the travel. Thought we had something in the works but not sure now.

Hopefully things will resolve soon!!!

Many prayers for Madison, Stella , Drew and all the kids needing extra prayers

Extra Prayers for my Husband Paul and me too.... (so I can stop stressing so much!! )

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


Please keep voting daily in the Pepsi Refresh project for Sophia's Cure.     
http://www.refresheverything.com/sophiascure 

Saturday, May 1, 2010

HELP SAVE LIVES!!! VOTE for Sophia's Cure in the Pepsi Challenge - Living with Spinal Muscular Atrophy

http://www.refresheverything.com/sophiascure
Please vote for Sophia's Cure in the Pepsi Challenge!!!
This money could benefit infants,children and adults affected with the same disease as Elizabeth!!

Spinal Muscular Atrophy is the #1 genetic killer of children under age two.  It is a group of inherited and sometimes fatal diseases that destroys the nerves controlling voluntary movement.  This affects crawling, walking, head and neck control, and even swallowing.

One in 6,000 babies is afflicted with SMA, and 50% of those diagnosed before age 2 will die before their first birthday.

One in 40 people are carriers of the SMA gene.

SMA can strike anyone of any age or ethnicity.

This disease steals that lives of precious infants and children!!!! Its free, no cost to you and just takes a few seconds to VOTE!!! A few seconds of your time could save lives !!!
If Sophia’s Cure wins the $250K grant, the money will be split between the work of Dr. Hans Keirstead and his MNRP and the work of Dr. Kaspar and the Gene Therapy Program. The exact split will be determined by Sophia's Cure Foundation based upon the two proposals that they receive from these programs and their current needs. For more information on Sophia’s Cure: www.sophiascure.com

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

www.our-sma-angels.com/elizabeth