Thursday, April 30, 2009

Spring... but precautions (Spinal Muscular Atrophy)



Elizabeth is getting out-side in her power chair more since it finally quit raining this week. We have a carnival that sat up a block from our house. So, her and her Papa have been driving up there. We will not let her go up there when its open because too many people. She drives around and just looks. She thinks it totally cool that she can drive right up there with Paul. She gets all excited pacing in her chair back in forth from living room to dining room waiting for him to take her up there. Twice today they went up there. Too funny seeing her act so much like a kid. Tonight she played with Blaze outside next door in their yard. Seeing this just warms my heart. It gives me so much joy. Lizzy is so much stronger and doing so well.
Christen knocked her back out on Sunday at the Corbyn's baby shower. Her sister Dana and her were lifting Lizzy's power chair out of the van since we do not have a lift. She refused to go to the ER. Well, on Monday she had to go see DR.Hough and after a 20 minute lecture I guess on why she should get a lift and not lift a 500 pound power chair he popped her back right back into place and she has been in some pain this week but seems to be better today. We have a lift coming here soon from a very dear person that has one we can have!! So, hopefully here soon we will have one. Thank you Amanda and we will be there very soon to pick it up!!

Lizzy is going to hopefully be starting myofascial release here soon with our neighbor that is a PT. I hear its great for SMA and also back injuries. We have no PT or OT and do all her therapies every day with me. I am not a professional and she needs swim therapy.OT and PT but we are not able to get it here any more.

What Myfascial Release?
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 us to look at each patient as a unique individual.

We have talked to another family that uses this on their kids that have the same disease as Elizabeth and they are doing well with it.

I saw on the news tonight that swine flu is in Chicago now!! The closed 12 schools!! OMG... This is so scary. We just had got over our " Winter Bubble" now we must put masks on Lizzy again if we go into the public.

Preventing the Flu: Good Health Habits Can Help Stop Germs
Fact Sheet:

Avoid close contact.
Avoid close contact with people who are sick. When you are sick, keep your distance from others to protect them from getting sick too.

Stay home when you are sick.
If possible, stay home from work, school, and errands when you are sick. You will help prevent others from catching your illness.

Cover your mouth and nose.
Cover your mouth and nose with a tissue when coughing or sneezing. It may prevent those around you from getting sick.

Clean your hands.
Washing your hands often will help protect you from germs.

Avoid touching your eyes, nose or mouth.
Germs are often spread when a person touches something that is contaminated with germs and then touches his or her eyes, nose, or mouth.

Practice other good health habits.
Get plenty of sleep, be physically active, manage your stress, drink plenty of fluids, and eat nutritious food.

***Fact- You should always practice these things no matter who you are to keep from spreading GERMS/Illness to others!!

Many Prayers for Jake(Who is in the hospital) , Sophia(who has been having issues this week, Roman who (just had surgery) Molly, Grandma Roz, newly diagnosed families and for all the people who have gotten sick with the swine flu.

We believe in miracles!!!!!
www.our-sma-angel.com/elizabeth

No comments: