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
No comments:
Post a Comment