Saturday, October 31, 2009

"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

Wednesday, October 28, 2009

"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

Monday, October 26, 2009

"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

Sunday, October 25, 2009

"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

Saturday, October 24, 2009

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

Wednesday, October 21, 2009

"We did it. We got it and All is well" (Spinal Muscular Atrophy Type 1)



Lizzy got her H1N1 shot today. I gave her some infant Motrin before we left and the so far she is fine. Its was uneventful for a change.  The nurse came out to the van and gave her the shot so we did not have to go through what we did last week. The nurse told us Lizzy has to have a booster Nov.18. With all the H1N1 all over the place it was what we had to do. I was so much against the shot but... after researching and talking to health care professional I think we made the best choice for us.
I will keep every-one updated on side effects but so far thank goodness all is well.
 Elizabeth at this very moment is playing on her pc a game that is a teaching game and so far she likes it.

Prayers to all the sick kids and those dealing with a new diagnosis. Please do not give up. You need to find hope. "Hope" is what has kept us fighting for Lizzy.  Pray and Thank God for  your gifts. Lizzy is my gift.
 I whisper in Lizzy's ear every night right after she falls asleep since she was an infant " You can do any thing. Some way some how" She does too....

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

Tuesday, October 20, 2009

Staying well and in our bubble (Spinal Muscular Atrophy Type1)


Our H1N1 shots are in. Okay.... with the recent scare of that virus being EVERY WHERE we are getting our shots. I worry about Lizzy getting the shot so close but we are flying out Nov. 9 for CA.  Lizzy will get hers in our van. No more exposing her to ANYTHING out there. It takes 8-10 days for it to even help.  We will have it about 18 days before we fly so that makes me feel a bit better. No place worse to catch something than a plane.  I do have an email into DR. Schroth about getting the shots so close together but I read online you can get them together. I just want to make sure Lizzy will be ok.

Lizzy was doing school work all day today on her computer. We took a few breaks.  She is loving it now. That took forever her to even want to do school work over 3 hours. Christen and I both helped her. It was great having Chisten home today.  We let Lizzy think it was her idea to keep working. There are some great learning web-sites out there at Kids sites . Also one of my favorites for Lizzy is Starfall.

Here is some info on staying well I got in an email a few weeks ago I thought I would share.

1. Frequent hand-washing (well highlighted in all official


> communications).

>

> 2. "Hands-off-the-face" approach. Resist all temptations to touch

> any part of face (unless you want to eat, bathe or slap).

>

> 3. *Gargle twice a day with warm salt water (use Listerine if you

> don't trust salt). *H1N1 takes 2-3 days after initial infection in

> the throat/ nasal cavity to proliferate and show characteristic

> symptoms. Simple gargling prevents proliferation. In a way, gargling

> with salt water has the same effect on a healthy individual that

> Tamiflu has on an infected o ne. Don't underestimate this simple,

> inexpensive and powerful preventative method.

>

> 4. Similar to 3 above, *clean your nostrils at least once every day

> with warm salt water. *Not everybody may be good at Jala Neti or

> Sutra Neti (very good Yoga asanas to clean nasal cavities), but

> *blowing the nose hard once a day and swabbing both nostrils with

> cotton buds dipped in warm salt water is very effective in bringing

> down viral population.*

>

> 5.. *Boost your natural immunity with foods that are rich in Vitamin

> C (Amla and other citrus fruits). *If you have to supplement with

> Vitamin C tablets, make sure that it also has Zinc to boost

> absorption.

>

> 6. *Drink as much of warm liquids (tea, coffee, etc) as you can.

    *Drinking warm liquids has the same effect as gargling, but in the

reverse direction. They wash off proliferating viruses from the
 throat into the stomach where they cannot survive, proliferate or do

any harm.



 I suggest you pass this on to your entire e-list. You never know 20

 who might pay attention to it - and STAY ALIVE because of it.

Many prayers to all the sick kids.

Keep us in your prayers. The power of prayer is still very strong.

"We believe in miracles because we live with one"
"Being defeated is often only a temporary condition. Giving up is what makes it permanent"
www.our-sma-angels.com/elizabeth

Sunday, October 18, 2009

Common Sense (Spinal Muscular Atrophy Type 1)

Elizabeth got her seasonal flu shot finally on Wed at the Health dept. Got a call from the doctor's office telling me I could not pay for Elizabeth's shot because she gets medicaid. I was one furious grandma. They told us that the shots were available at the Health dept on Wed from 8am-5 pm .

Christen and I walk in the health department on Wed . Christen was carrying Elizabeth and at my DEMAND Elizabeth had mask on her face. Talk about everyone freaking out because Elizabeth had a mask on. So, we were asked by three different people( That work at the health dept) if Elizabeth was sick. No... we are just being careful so she does not get that way. As, we were sitting (Me holding Lizzy now)waiting to get Elizabeth's flu shot a child that just came out of the room (we were next in line to go in ) coughing like crazy.... My gosh..... Okay ,we are freaking out now.... Then, a family with Mom, Dad and two kids came in and the toddler boy had pajamas on at 3pm in the afternoon and you can just look at him and see he was sick. Glassy eyes, Flushed face......ugh... Okay, taking a deep breath at that point holding Elizabeth closer to my chest......Then.... the Mom says" can he get his flu shot?" "We took him to the ER and he has croup... and fever.... " At that point I was ready to take Lizzy and RUN out that door. Thinking to myself" Why are they making us come out here to get her shot? Knowing that it would be full and most of the time full of people with illnesses with out common sense." My gosh is this just bad dream or what ? Are people really this ignorant. Thank goodness at the moment when my face was turning beet red because I was furious we have a nurse say I can take you in my room. Then, after she saw the mask on Lizzy she says is she sick? Ohhh Lord help me here I am ready to just blow up..... Then we proceed to tell her about WHY Lizzy is has a mask on her face. Then.... ( oh gosh you will not believe this one) The nurse coughs..... yeah coughs and says" Oh I have a cold.... it your choice.  No you want me to give her the flu shot or I can get some one else". At that moment I am carrying Lizzy and backing towards the door. almost tripping over my shoe string. ... My face even redder I just want to run.... HELLO...... didn't you go to nursing school. You do not come to work with a bad cold at the health dept and administer shots..... (Okay ..... somebody wake me up this has to be a bad dream.) Christen and I say at the same time "Absolutely NOT !"

They put us back out in the waiting room with the kid with the fever with the croup and another child that was waiting for her siblings  that was coughing . At that very second I was feeling like I just wanted to SCREAM!! The door behind us opens and its a nurse that knew Lizzy when she was first diagnosed and says "Hi guys haven"t seen you in awhile. I haven't seen Elizabeth pics in the paper since the Spring. " come on in I will give Elizabeth her flu shot. She talked to us about Lizzy and sick kids out in the waiting room and led us out the back way. Thank you God for getting somebody with a heart and common sense.

Lizzy had bad secretions until today. I gave her extra fluids and pedilite but no other side effects.

The schools here are full of H1NI . The doc's office has masks and germx out side there main entrance and you have to use the Germ-x and the face mask if you have any of the symptoms like fever, cough, temp etc.
WE ARE basically living in a bubble right now. Lizzy and I can ride in the van we just can not talk to anyone or get out.

We were not going to get Elizabeth the H1N1 shot but found out from the nurse that did Elizabeth's flu shot that its the same base as the season flu shot with the dead H1N1 in it. Then, one of Elizabeth's program directors said the Nurse can come to the car and give Elizabeth her H1N1 shot at the Health Dept. soon as they are available in the shot form.  Thank goodness.

I had a lady from Chicago contacted me because she had heard about Elizabeth from one of our former donors through a web-site. She had some breast milk from not long after her twins were born she wanted Lizzy to have it because there was way too much for her twins that now weigh about 4 pounds. They were around 2 pounds when they were born. The sweet babies are still in the NICU . Yes!!  Lizzy needed a little boost. Thank goodness some great milk for Lizzy with all those extra antibodies from a mother of preemie twins. She had blood tests and she is very healthy. She said she would get more blood tests if we wanted her to. So, Christen, Lizzy and I went to Chicago today to go pick up the milk today. She lives down town . Lizzy and I sat in the van and Christen went  and got the frozen breast milk. They were painting the bathroom down stairs here today, laying tile and Paul asked us to leave. Her and Christen talked for while. I am glad they invented cell phones. I had to call and ask Christen of she forgot we were there. I can understand. They think the babies will be special needs babies or one of them. The docs are not sure yet. Bless their hearts. So, Christen was helping her with resources. Mom is already ready to do what it takes to get these babies home and get them what ever they need.

We got the confirmation for our flight to CA next month.... 7am in Chicago our flight leaves for CA. We will be awake all night the 8th because we have to drive 2 1/2 to Chicago..

We do not even know if Lizzy's Bipap will be able to be used on the flight. That is another story. Pray for us

Thank you for all of you that care about us. Many prayers for all the sick kids!!

"We believe in miracle because we live with one!!"


www.our-sma-angels.com/elizabeth

Sunday, October 11, 2009

Just Another Crazy Week (Spinal Muscular Atrophy)



Lizzy had her birthday party on last  Sunday. It was a beautiful but chilly day. Six.... The sound of her being 6 gives me a warm fuzzy feeling that warms me straight to my soul.
Elizabeth got lots of great gifts. One of her breast milk donors was there with her financee and her son.
Nice party with many guests. This next week I will write all thank yous out. So, many people remembered Lizzy on her special day. They made her feel very special.
This week has been kind of crazy.  Besides freezing my hiney off  this is the second week Christen has not been around much because she is watching Corbyn and picks Caitlyn up after school and I am trying to homeschool Lizzy and entertain her. We do it though . Lizzy and I get done want we need to get done.
Friday I woke up to hammering and all kinds of noises down stairs. Then, I heard cussing.... lots of it. Brandon had some extra tile and was going to tile the bathroom floor. Okay, This is a very small 1/2 bath. It maybe would take a day at the most with pulling the sink and the toliet out. Well..... The guy we bought the house from back in the 1990 we have found in our living here and fixing things he was notorious in tweaking short cuts and then hiding the mess ups he caused. Well, the bathroom was no different. Thankfully, no one has fell through sitting on the porcelain throne. The floor joist had been cut through!!  All these years living here and we had no clue. We have even redone the bathroom but not the floor. I had painted and wall papered. I had bought a pedistal sink about 4 years ago and they decided they were also going to put that in also while they were pulling up the old floor. Well, the pipes were also messed up..... oh my gosh . So, now my bathroom is totally torn up. They had to replace all the pipes and the walls etc while they were at it . The old owner had used one of the old french doors for the wall that is over the brick and oh my..... . Lizzy and I have been stuck upstairs for 3 days now while Paul and Brandon have been redoing the bathroom.  Hopefully, we can have it all together by Tuesday. 
I received a very special package yesterday from a person from Passion River Films that has read my blog. They sent me a very inspiring video called "39 pounds of Love". I have heard about this documentry about a man with Type 2 SMA and his struggles in his life.  I really wanted to see it. He also wanted to find his doctor that diagnosed him and said he would not live to be six years old . He lived to be 34 years and actually he lived until a few weeks ago. His mother and I have a lot of the same way of thinking. How can a doctor give you age you will die because you have a uncureable disease?  They are not GOD they are only humans. Ami wanted his doctor and many others  like him to know you can not play God and put an expiration date on a human beings life.  Ami doctor had said he would not live past 6 years old.. Lizzy was diagnosed just about the same way telling my daughter and Brandon Lizzy would lucky to be here a year let alone 2. She is SIX years old now. That is 3 times her life expectancy. Ami was from Israel and came to the states to find that doctor that diagnosed him. I cried a lot through the film....... If you have not watched it YOU NEED TO!!

Lizzy is doing well just bored this week and very bossy... got to love her spunk.

I have to say something that is bugging me. We keep calling the doc's office about getting Lizzy's flu shot well.... they keep telling us that the Medicaid's ped shots are not in yet. I asked today if I could pay out of pocket for a peds flu shot for Lizzy because we fly out Nov.9 and they said sure and its scheduled for WED this week. Is this like discriminatory  or what? What is the difference? Are the shots different for medicaid patients? I am confused besides this really ticked off about this one. Grrrrrrr

Many prayers for all the sick kids out there. 
Thank you all the great people out there that help fought to save their kids and grand kids. Its from inner strength and deep love.
Thank you to the many that have been  a part of our lives.
 We believe in miracles....because we live with one.
www.our-sma-angels.com/elizabeth
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