A lot to talk about- Living with Spinal Muscular Atrophy

 So, much has been going on. Sunday Night we heard the news about the man that killed so many world wide was captured and removed from this earth. That took about a 30 minute explanation to Lizzy on how he was not a good person and before she was born he killed many Americans by having his people blow up planes because he did not like America. I explained how President Obama made it just a bit safer for us just with us knowing that this terrible man was gone. I was at the doctors office on 9-11 and watched it on the TV. I felt violated that is  the only way I can explain it and DEEP sadness for the families that lost their lives over these terrorists terrible deeds that changed our lives forever.

The Royal wedding was also what Elizabeth and I watched. Friday morning the second time around on TLC. She watched in amazement and asked all sorts of questions there also. It was a wedding to remember and one many can just dream about.

Lizzy's good friend Ben( pictured above) ran a marathon and donated the money in Lizzy's honor to Center for Courageous Kids . How honored we felt. Lizzy's reply when I told her was that of a normal 7 year old. The letters "OMG!" she said and I just love him!!" He is a very special guy Lizzy met as a counselor at CCK a few years ago. I am thinking this was her very first crush. He is becoming a doctor. Lizzy was not able to go to CCK this year because we were not going to able to go and then she was in the hospital when the SMA weekend was. We really missed going.
Lizzy is getting so much better. She is still getting plugs up EVERY day but everyday she is that much more better. I just wish the plugs would stop.

The myfasicial release is working well. Lizzy's ribs are going back slowly. After the hospital stay we were concerned. I am doing it every day as before and we are seeing Linda once a week again to get her back where it needs to be. We understand she will need spinal surgery  but her ribs are our concern. Getting her ribs back while she is still flexible is our main goal at this point. Three professional told us that surgery right now not help her ribs and its smarter to get those ribs back before she decide to do the surgery. Those ribs will go back into place it will be much easier for her to sit. If she does surgery now her ribs will not improve only her spine. Its from not proper bracing the last few times. Which is no ones fault. Its just because no one knew here about SMA and to lay her down and then and then sit them up to get a proper correction to her ribs. So, Lizzy's new TLSO is done and we pick it up on Thursday and she gets her NEW Chair seating on Monday!!


I see my mother quite often these days. I think I see her more since she has been in the nursing home. 


I have not had much time to be online or to talk on the phone. I am just so busy all the time. Lizzy's appts, daily things here helping Lizzy with home work and I have also been making bows for our beautician to sell at her salon 
for Lizzy's medical/need fund.  Keeping a constant flow in her account helps with her MF release. 


Keep us in our prayers. Paul still can not find a job. Anyone that needs a HVAC tech email me!! He is great worker. He has been mowing lawns and doing some outdoor work to help with bills.
We made it through another month and with help from some of our good friends helping us with the hospital stay. It gives me a warm feeling knowing that we have friends care that much about us. 


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