A Long Week - Spinal Muscular Atrophy

Lizzy looks chunky in these pics but honest its her TLSO under her shirt!!

I am sitting here thinking about the week.  You think the sun could shine just a few more days a week. Its been cloudy all the time it seems.  I am really tired. Not sure why.  Maybe  from not much sunshine even though I am using 2000 IU of D-3 .  Its been a long week. I am just plain tuckered out.

Dawn found out she had Mono, Corbyn just got over Roseola, Caitlyn just got over H1N1 and Lizzy well....  she has been pretty good week after a scare on Monday night.  She was alarming and scared the bijeepers out of me. I was so afraid she was getting sick but to my surprise it was her bipap. I started using her back up bipap and all is well. She told me her bipap did not feel the same and she could not breathe as well. Changed it out and all is well.  I am so thankful she can tell me these things. The back up bipap had been fixed after it went out awhile back and we have not used it. It is working fine now. Thank goodness.

You know I keep asking myself why so many medical professionals "dis" the Amino Acid diet that many of the  SMA kids are on. I am not understanding this. Why are they not believers?  So, many kids that are using the diet correctly ( Double diluted ) with supplements seem to be doing so well. Why is it so hard to accept? Just the fact that the NIV Protocol for SMA and the Amino Acid diet have helped these kids get stronger and they are living longer should be proof enough.  I get so upset when I hear a medical professional has not given this diet a chance.

We still have not heard from Medflight about our canceled flight diet due to the H1 N1 National Emergency.  Hope we can fly in April. )Oh April..... Spring can not wait!! )

Elizabeth has been full of it all week. I am loving it. She is just a great kid with so much to say.
She is doing so well with the myfascial release. She seems to be moving a lot more. I am glad we made this decision to get her this therapy.


Many prayers for all the kids sick!!
Prayers for MJ, Karah, Stella, and Jacob.

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

Soaking up some Vitamin D - Spinal Muscular Atrophy

Just a real quick update on Elizabeth.
I took Lizzy out-side today to get some sun. Its been raining here a lot so we do not get out side much. It was warmer than it has been today and her and I needed to get outside.  She drove around the yard and on Becky's drive way, up and down the ramp many times then she spotted a Monarch butter fly. She was amazed and asked all sorts of questions about the butterfly so after we came in we learned all about butterflies.  She told her papa after our lesson and talking about butterflies on how they are caterpillars, they eat a lot then..... they build a house called a cocoon, then they take a long  nap and wake up and become beautiful butterflies. She listened well.

We have been very careful not taking Lizzy any where in public even though she did have her H1N1 shot. She gets her booster in for few weeks. I still am worried about her getting the virus.
Christen and Brandon went to give a presentation at the Bloomington Fire Dept for the MDA tonight. The fire dept raised around$ 8,000 all together for the MDA.   Good job!! Brandon and Christen talked about what the MDA does and what the MDA has done for Elizabeth.
Lizzy and I stayed home . We did school work most afternoon except when we went out-side . She soaks up everything up so well but teaching her to read has been a challenge. She can so stubborn and very selective  on what she wants to learn.

Caitlyn is getting better and Corbyn is getting better also. He has Roseola. He still has the rash but his fever is gone.

Many prayers for our friend Jacob that has H1N1. He is in the hospital intubated in N.C. He is also has Type 1 SMA like Lizzy.We see him at Stanford and  we spend time together at CCK in Kentucky. We are very worried about the little guy. Get better quick Jake.

Many prayers for all the sick kids!!

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

"Our Genie, Michael Jackson, Devil girl and the big lady" ( Spinal Muscular Atrophy)

Lizzy has had a good day handing out her body parts candy, toe jam cotton candy,boo boo bandaids candy, bags of blood candy and other treats. Lizzy is something . She and her mom were looking at all the candy at Oriental Trading awhile back had online and she wanted all the bloody gore stuff. So, Christen ordered it for her. She has a huge sense of humor.  I love it!!  She laughed about it all and laughed when she handed out her bags of gore today.

Lizzy asked me to make up her eyes and I did for her genie costume and she was so excited.
We had the a devil girl(Rachael) and Michael Jackson (Robby) stop by. Robby was Michael Jackson and looked awesome!! 

Caitlyn tested positive for influenza yesterday she was unable to to go out for Halloween . Christen took ( dropped  it off  on door step) her the new Tinkerbell movie and a bag full of candy so her day was better.  Caitlyn was so upset she was sick and could not go trick or treating.  Caitlyn got Corbyn a toy and some things he can eat too. Caitlyn is on tamiflu and doing  a lot better today. Many prayers their way. Corbyn tested negative but he is sick also.

Christen & Brandon took Lizzy out to some relatives and good friend's house trick or treating tonight. Well, when Christen was with Rachael Brandon had Lizzy in the van at somebodys house Brandon's Mom came up and saw Elizabeth for the first time in over 4 years. The woman lives 5 blocks away and never sees her or even calls. We do not talk about her. We leave it alone.
Well... Elizabeth tonight shocked me.  After Brandon left  shetold me "There was this big lady that came seen her in the van with some kids with her that took her picture".  I said "It was Grandma Debbie". She said "  It wasn't. "It was some big lady with kids."  She did not even know who her own Grandmother was.  Is that not sad or what? It hurts me that woman has alienated Elizabeth like she has. Lizzy said "I  did not know who she was but said she did not like her" . Hmmmmm ya think??
We do not worry about it.  Lizzy is happy just the way things are with the people in her life. 

Any way, Lizzy had a good night being a "Genie".
Happy Halloween.

Prayers for all those sick.

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

"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

"People sometimes just shock you" (Spinal Muscular Atrophy)

You know sometimes people just shock the heck out of you. Today, Christen was on the phone with Jonathan at Stanford when DR.Wang walked in. Christen's fear as mine was flying with H1N1 being so wide spread , Lizzy not having her booster for the H1N1 until Nov.18 and the bipap issue. So, DR.Wang says he does not want us to fly until its warmer. I guess that is Spring? I was shocked... floored totally taken by surprise. Now, the big question. Is DR.Wang going to let us get the medicine from there even though we did not fly? Med Flight threaten us with being penalized if we canceled this flight. We were sick in March with a bad flu and they just have to understand we are only human. People get sick and things happen.  You have to take precautions with a child with Type 1 SMA. We drove out there in July because of the FAA regulations with the bipap. Jonathan said "DR.Wang is writing a letter to Medflight to help us." I hope it works.  The flight was booked this month with out medflight even asking us if the flight time would be okay. When, Gene was there this would of NEVER happened or have we ever been treated so badly.  This new guy that is just plain mean and cocky that books the flights. He says "He calls all the shots"  We had  7:15 am flight at O'hare 2 1/2 hours from home (when traffic is good) . We would of had to stay up all night to make that flight. I do not want to sound like a whiner....But my gosh people have a heart. I thank God they help us but they have to UNDERSTAND our life is not an easy one and sometimes you need to ask us if we can make a flight before booking us. We need to take precautions for the safety of Elizabeth.


On good note I have a shocker to tell. Lizzy is having a benefit to help us with out of pocket medical expenses, travel and other things Lizzy needs in Jan.
Elizabeth's dad's Grandmother and her friends from the Moose decided to do one for Lizzy.  My emotions are still taking over and tears are once again today flowing from my face when I heard this.  The funny thing is they got a local biker club to donate their club house and open bar for the event. I am still in shock. Bikers and a bunch or elderly ladies coming together to help Lizzy!! Visualize this in your head. My Gosh.  Lizzy has touched so many lives and so many people are good to us because of her. Elizabeth's Dad immediate family does not have anything to do with Elizabeth but his Grandmother has for the past 4 years after she found out about Lizzy. She is a great lady with a heart of gold. 
Christen went to Prompt care tonight and has ear infection, Bronchitis and allergies. So, its not viral but I am still treating it as such. Add her to your prayers,

Many prayers to our friends Kaitlyn, Drew,MJ and all those sick people with H1N1.

Thank you for keeping us in your prayers!!

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

"Living in the Bubble " (Spinal Muscular Atrophy)

I am starting to feel very confined.  You know the " Caged Cat Scenario" . I am freaking out at anyone coming into the house. Some body uses the toilet I am in there disinfecting it less than 2 secs after. I am constantly wiping the phones off before I use it. I am bleaching the silverware! I am being a freak.  I wipe door handles etc I just fell into  "germ phobic"category ..... I am an "Antiseptic Grandma". I  armed and loaded with hand sanitizer in my pocket. I stand at the back door when some-one comes in and make them wash their hands.
I have always been a bit cautious but this H1N1 scare has me confined in my house and disinfecting anyone coming into the house.
Man, we need a good COLD winter to freeze and kill all these nasty GERMS!!
We fly out to CA on the 9th of November and I am freaking out so bad I can not sleep. Worrying about us catching something or giving somebody something. Worrying about Lizzy and the bipap situtation. UGH. If I had the money we would DRIVE. It would be safer. We could control a lot of the germs that way.  We would have to take the long route but I feel so much safer. I know its a long ride but we would do it if we had the funds to go. Last trip was about 2500 with food motel, gas etc. That was being very conservative.

Christen caught a viral infection from Corbyn and my son inlaw Jeff. Not bad but still a cold. I am so afraid she will some how no matter how careful we are get Lizzy sick.
Keep us in your prayers!! We pray for all those sick right now to make a full recovery.
"We believe in miracles because we live with one"
 www.our-sma-angels.com/elizabeth

National Emergency H1N1 (Spinal Muscular Atrophy)

Christen, Elizabeth and I had our H1N1 shots last Wed. We had miminal side effects.  Just hydrate yourself very well the day of the shot and the day after. Its causes dry mouth. We all three had this side effect.

Please contact your local health dept to see when the next clinic is to get the H1N1 if you want to get the vaccine.

From AOL :

ATLANTA (Oct. 24) - President Barack Obama declared the swine flu outbreak a national emergency, giving his health chief the power to let hospitals move emergency rooms offsite to speed treatment and protect noninfected patients.


The declaration, signed Friday night and announced Saturday, comes with the disease more prevalent than ever in the country and production delays undercutting the government's initial, optimistic estimates that as many as 120 million doses of the vaccine could be available by mid-October.



Health authorities say more than 1,000 people in the United States, including almost 100 children, have died from the strain of flu known as H1N1, and 46 states have widespread flu activity. So far only 11 million doses have gone out to health departments, doctor's offices and other providers, according to the Centers for Disease Control and Prevention officials.

Administration officials said the declaration was a pre-emptive move designed to make decisions easier when they need to be made. Officials said the move was not in response to any single development.

Health and Human Services Secretary Kathleen Sebelius now has authority to bypass federal rules when opening alternative care sites, such as offsite hospital centers at schools or community centers if hospitals seek permission.

Some hospitals have opened drive-thrus and drive-up tent clinics to screen and treat swine flu patients. The idea is to keep infectious people out of regular emergency rooms and away from other sick patients.

Hospitals could modify patient rules — for example, requiring them to give less information during a hectic time — to quicken access to treatment, with government approval, under the declaration.

It also addresses a financial question for hospitals — reimbursement for treating people at sites not typically approved. For instance, federal rules do not allow hospitals to put up treatment tents more than 250 yards away from the doors; if the tents are 300 yards or more away, typically federal dollars won't go to pay for treatment.

Administration officials said those rules might not make sense while fighting the swine flu, especially if the best piece of pavement is in the middle of a parking lot and some medical centers already are putting in place parts of their emergency plans.

The national emergency declaration was the second of two steps needed to give Sebelius extraordinary powers during a crisis.

On April 26, the administration declared swine flu a public health emergency, allowing the shipment of roughly 12 million doses of flu-fighting medications from a federal stockpile to states in case they eventually needed them. At the time, there were 20 confirmed cases in the U.S. of people recovering easily. There was no vaccine against swine flu, but the CDC had taken the initial step necessary for producing one.

"As a nation, we have prepared at all levels of government, and as individuals and communities, taking unprecedented steps to counter the emerging pandemic," Obama wrote in Saturday's declaration.

He said the pandemic keeps evolving, the rates of illness are rising rapidly in many areas and there's a potential "to overburden health care resources."

The government now hopes to have about 50 million doses of swine flu vaccine out by mid-November and 150 million in December. The flu virus has to be grown in chicken eggs, and the yield hasn't been as high as was initially hoped, officials have said.

"Many millions" of Americans have had swine flu so far, according to an estimate that CDC Director Dr. Thomas Frieden gave Friday. The government doesn't test everyone to confirm swine flu so it doesn't have an exact count. He also said there have been more than 20,000 hospitalizations.
 
 
"We believe in miracles because we live with one"
www.our-sma-angels.com/elizabeth