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

2 comments:

Barb said...

Lizzy is absolutely beautiful!

Maria B. said...

Lizzy looks awesome in this picture!