Living with Spinal Muscular Atrophy - Fighting illnesses, New doc and Mean people

Elizabeth is doing really well after a bad respiratory illness . Wish,  I could say the same for me. Its been a brutal last few weeks and I am still sick.  Sinus cleanse has been a daily ritual. My sinuses have been on fire it seems like. I still do not have much of a voice. I have hardly been on the phone or online. This illness has kicked my hiney.

We met Lizzy's new doctor. We really like her. She was with us for a few hours the other day just talking. I gave her lots of reading material. We also discussed how hard it is to get things you need in this area for medical needs. She impressed me on how she values life. She thinks we need to start a support group here. I am going to write a hand-out to give our doctor of all our resources  She was impressed with Elizabeth also. 

We had Lizzy's IEP and it went well. Thank goodness!! 

Now the kicker.... looks like we may not be able to go the the FSMA conference in Orlando this year. I do not think we can swing it but I am praying for a miracle for Lizzy's sake.. This is Lizzy's time to shine. This is something she looks forward to do every year now  to see her friends and deserves be a part of. I seriously think the reason we could not get much help with going this year is because of me. I was treated very badly in CA  after the conference by a very important person from FSMA. I was yelled at and totally intimidated in front of others in the hallway before a meeting with DR. Wang . I was suppose to speak at the luncheon minutes later. This happened  in front of Elizabeth also. Totally uncalled for . Only because I wanted to thank another organization for helping us with  helping the trial Elizabeth was in and for putting on the luncheon. After, the end of the intimidation session with this person. I told him that "this is so wrong... to be this way and "You all need to work together for the kids!". I could not speak very well at the luncheon because I was so very upset after that. . This happened to me , yes me !! Lizzy's Nina who tries to help everyone she can learn about SMA.  I have played this out in my head many times since this happened. At no time did I do anything cause such bad treatment. I knew then we would no be going to Orlando for the conference because of what happened . What happened to me was so wrong!!  Mean people JUST SUCK! 

Lizzy shines any way. She is our miracle. We will go back to Disney some how.. I know it will break her heart if we do not go thois June because she says every day " She can not wait to go for the conference at Disney."   Maybe we will find a way for her to go but its just so wrong what happened to me. 

Paul had three calls from jobs this week but they have not called back for an interview. 

Please say a few prayers for us . I need some to get me better and he needs a job soon!!  

Many prayers for Mary Nelson.

Lizzy also was serial casted this week.
We have been invited to two Christmas parties already!! The holiday season is arriving fast!!  

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

www.our-sma-angels.com/elizabeth