"Loving Lizzy, Flubber Flu and People that you just want to thump in the head"' Living with Spinal Muscular Atrophy

Sitting here thinking about my girl just makes me beam with pride and love. Never know what  she is going to say or do. She was dancing her her power chair on the patio and singing last week while her I were outside together. We were having a conversation about something I was awed at her comprehension level. Its was like adult conversation. She really "gets it" . She is so aware of every thing.
Every thing we have ever done for her seems like nothing to be able to have her in our lives. All the fighting with doctors, research , trials and errors.  Its all worth ever ounce of effort. She is our miracle and we beam with pride. She is my heart .

 Have you encountered the Flubber Flu yet? Seen the movie Flubber? Which this is how I describe  a virus we encountered, I may whine sometimes about my hands going numb or my weight but in reality in my 51 years of life I am no whimp by any means.  I have woke up feeling like crap, took a shower and told myself I did not have time to be sick for many years. I have worked three jobs at times, ran a SPORTING GOODS DEPT that sold guns and dealt with men EVERY DAY, worked with LIVE turkeys,went to college while bartending at night while raising 4 very ornery girls , went through natural labor 4 times(" Like taking your lip and pulling it clear across your head" my grandmother used to say) etc... the list of my accomplishments goes on but...  I  have never had time to really be sick.  I mean to be in bed for hours sick with blanket pulled over my head I had to be close to death.. Well, I thought I had food poisoning from eating while traveling and a migraine from my allergies. Little, did I know it was the deadly "Flubber Stomach Flu".. I thought I had something ALIVE in my stomach and scary part was trying to get it out of me. I felt like something was punching my insides. The pain was intense and when it left my body it was quite a relief. The smell of the gas could probably be bottled and used for a toxic gas for chemical warfare. ewwwwwwwww!! I had food poisoning one time for eating some chop suey that sat out all night and I did not know it. Very similar symptoms. The final round of intense cramping lead to a huge relief besides a rest area worker probably quiting their job. I could not eat, drink or move for about 14 hours. A virus kicked my butt where I was not functional 14 hours. Down for the count. Had I known I had a virus I would of not even been with 5 feet from Elizabeth let alone another human being. I thought it was my allergies and something I ate. I did stay away from every one with my first symptoms. I just took off went to my room and did not move I mean not even  a sip of water because I would PUKE!! Blanket over my head and  not touching, breathing on any one. I was fine the next day. So, as I said I thought it was eating fast food and my head ache from allergies from the high pollen.

Well, sadly Elizabeth started with symptoms on Monday evening blowing food up her 60ccs vented tube, turning very pale and begging for bipap. Oh My God what did I do? Christen was a mess she was so upset.  Did I  give her another virus? No, I had allergies and a migraine.... NOT....  I was not even around her at all after my first symptoms. Guilt sat in....  It was me that gave her a virus last year in March. I was going to Curves at the time and a mother came in to work out to get away from her sick kids and I caught it about 5 days later even after I stripped when I came on threw my clothes in the washer and immediately took a hot shower. Its an airborne virus. I quit Curves after that incident. I was finally starting to show I was losing weight. I just can not chance catching anything and bring it home to Lizzy. I stay home unless Lizzy has an appt because I am so afraid of catching a virus and bringing it home.  How could  I of gotten anything? I am a freak when it comes to going in public. Always washing my hands, I even disinfect the toilet at home before I sit on it. Who infected me? I am so careful how could this happen?
Yesterday, was terrible. Lizzy could not come off bipap. Her heart rate was ranging from 140-170 her O2  was good when she was stable  but it was a scary day. Her heart rate would drop to 60s or 70s FROM 170 in a matter of seconds and blow her food out of her tube and then have diarrhea. It was a very intense day yesterday. I was afraid she would dehydrate and she needed something for the nausea. So, when we had someone from UW call to tell us there was nothing he could do to get Lizzy scheduled with the RTs at UW to admit Lizzy into the hospital in May to get her Trilogy ( machine Lizzy needs) he was calling to get back to us from a phone call we made on Monday to UW to the person that called us to set up dates on Friday as we were leaving town. I called them back to tell them Lizzy needed something for nausea immediately that was at 11:45 AM yesterday morning. He treated me like a stupid moron and made me recant all the happenings since Christen had talked to DR. Schroth the phone ( because we have never dealt with stomach flu with Lizzy) the night before. No one called back by 4:30 pm and Elizabeth was doing this more frequently now. My concern was growing more and more. I had Christen call over to DR.Hough to see if they could give her something for nausea since apparently Elizabeth's illness was not important enough for UW to call us back. DR Hough's did  call her in somthing but the side effects on the drug they gave us worried me so Christen text DR.Schroth and asked her if this drug is okay for Lizzy . Still no response about the illness and its 3:27 p,m the next day . UW did call today and tell me since we did not get back to them with the date we could admit Lizzy for the machine we lost out on the dates.( which HUH? I CALLED ON MONDAY AND WE GOT A CALL ON TUESDAY SAYING THEY COULD NOT SCHEDULE THE DATES from the guy that made me feel like a Moran. ) ARE you as confused as me yet?????? WTH..... I proceeded to tell the lady that Lizzy is doing better today and why had not they called back when Lizzy was so sick yesterday. She said" She knew nothing about it and that was not what she was calling about only to tell me we blew it not calling them on MONDAY ( which I did do) and she would be in contact with us with dates.  If I lived in that same city and not 4 hours away I believe I would of went into that clinic and just ohhhhhhh my gosh let those nurses have a piece of my mind. What the heck. We love Madison but my gosh you do not treat people like that. No communication there I guess...... sad.......
Thank God Lizzy  was a lot better today.  Tonight though she asked for bipap and said her tummy hurt.  Christen now has the "Flubber Flu" and can not move with out puking or having the diarrhea. Its bad... stuff.

Lizzy had a great time at CCK last weekend. The time of her life. Thank goodness Jessica was able to help with Lizzy because there was no way I could even be around anyone after lunch on Saturday. I guess I was not missed either. Alrighty then.
Lizzy's camp counselor was Avery. She was really great with Lizzy entertaining her and all. Its such a great place.  We would love to have more time there. Lizzy got to see her BFF Emma . She talks about Emma all the time. Lizzy help design some hair bows for Emma so she could give them to her at camp.

 Nick . Lizzy and her BFF Emma above. 

Its sad we live so far from Ohio. We always feel so welcomed around the Ohio bunch.

Please add Lizzy and Christen to your prayers.

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