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

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

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

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