"Doing the Happy Dance" (Spinal Muscular Atrophy Type 1)

We have great news. We are not flying to Stanford this month. I can actually breathe easier and sleep easier. DR.Wang said "we can wait till Spring" . I am doing the "Happy Dance". Yes!!!  God is watching over us. Lizzy's angels are watching over us too.

My fear of flying was real because of the H1N1 virus and all the different viruses out there. "Sigh of  Relief" . We can remain safe in our bubble.

We are now going out to CA in April and then he wants to see us in June again. So, we can go to the conference too. From what I understand he we would like  us to attend the FSMA Conference.  We are also excited to meet all the people out there we have not met in the past and spending time with our friends from out there. I told Lizzy we pretty sure we are going to the conference this year and she squealed in delight.  We will be in California for a week. June is beautiful out there. Not to hot and not too cold.  Now.... do we fly or not? If Lizzy is with out her power chair she will be VERY upset. Her chair is her legs and being with out even for a few days is hard on her.  I do not want to drive to CA again but what else are we to do?  Now,  if Paul has a find job and can not go we are in trouble. We can also go alone but the traveling pace will be a lot slower. Some how some way we will get there. I have faith.

Christen is a bit better today. She has Bronchitis , ear infection and sinus infection. She has on antibiotic for two days now and feeling much better today.

Lizzy started Myofascial release yesterday. I am also being taught to do this while Lizzy is getting this. I am so excited that I am being taught this.


The difference in Elizabeth while she was doing this today was unbelievable. I could feel the release in her muscles. It was so calming to me also. Lizzy moved every single finger individually. She was so quiet. Lizzy is hardly ever quiet.
Its kind of expensive an hour ( For our income right now) but to learn this at the same time its worth every penny. It is my neighbor who does this at her office. She had her office disinfected before Lizzy came in yesterday and no other patients in or out before and after.

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 the therapist to look at each patient as a unique individual. One to one therapy sessions are hands-on treatments during which therapists use a multitude of Myofascial Release techniques and movement therapy.

Lizzy and her cousins Rachael and Robby carved Pumpkins tonight. Lizzy was so excited!! She decided she wanted a Micky Pumpkin. She actually loved pulling the slimy gunk out of the pumpkin.  Last, year she was like "WASH MY HANDS NOW ewwwwwwwwww" She is like that usually but not tonight.
Lizzy is doing good. Growing and as usual  always doing something or saying something to make me laugh.  She is my heart. She NEVER stops amazing me.

Many Prayers to all the sick kiddos . We heard our friend Brianna is in the hospital with  a high fever. Drew is also still sick. Keep them in your prayers!!   Keep us in your prayers too. The power of prayer is so strong.

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