Fall is almost here and what a LONG Summer- Living with Spinal Muscular Atrophy

School has started in much of our area. Lizzy will not be starting till after labor day which is fine with us.
Lizzy is excited because she is reading some things and wants to show off to her teacher.

Its been a long exhausting summer to say the least with all that has been going on in our lives.
Paul is healing and starts physical therapy on Thursday this week. Hoping he will be able to get a job soon as he is able.
Mom is finally back to herself mentally and is walking to and from the bathroom. The nursing home that she is in is the Good Samaritan here in Pontiac. They are doing an wonderful job and she has come so far in a little over a month. The nurses and aids are fantastic. I feel so much better she is doing better.
We had a busy last week as we went to UW in Madison twice. One for the SMA Education Day and other for muscle clinic. We were on a panel about traveling with Lizzy. We have traveled all over with Lizzy that is for sure. The ER info was very good.
We met with some great families in Madison. It was two fast trips. Lizzy and I enjoyed it because we GOT OUT!!
Now, the UW Muscle clinic day. It was a great day until the end. Lizzy is stronger than last time. She had the OT awed in watching her. The PT Karen was also excited about Lizzy also. DR. Schroth said Lizzy sounded great. Big difference between the RSV hospital stay and now DR.Schroth said.
The dreaded Xrays on her back and hips. Weeeeeeeell, Lets see how to explain this. Her curve is worse but........ her hips are great . The cons of doing spinal growth rods are a serious concern. Will it help her? Maybe a little,. Will it will stop her progression of her curve? Yes, but  it will not change her rib deformity and  she will lose turning her head side to side easily and will not be able to go on her exercise ball and stretch. Is her breathing affected? NO not at this time. Christen says,"Not at this time." DR.Schroth did not come back in and talk to us after Christen and the Ortho talked.  I am afraid we have upset her. I hope we can make Lizzy's  back better like we did her hips. Compared to April when she had RSV she is better but not since last year when she had her curve checked out.
Many prayers to the Lee family . Jocelyn lost her battle with SMA http://www.jocelynpaigelee.org 
and another little girl  Skyler Jones www.blog.skylarmariejones.com  lost her battle with SMA also. We need to find a cure soon!! Too many kids have lost their lives to this devastating disease.


Keep us in your prayers. 


Thank you to all of you that are in our lives!! 


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


www.our-sma-angels.com/elizabeth 

Finally, a much needed break - Living with Spinal Muscular Atrophy Type 1

It has finally cooled off here just a bit.
I just finished helping Paul in the shower. He is doing much better and healing well now.The incision area has shrunk and the hematoma has gone down. He still in some pain but not nearly as bad as before. That man scared the bjeepers out of me. He is a whopping 145 lbs now! The man eats more than me! I need his metabolism. His sister Sharon is skinny like him also. She is not a diabetic though as far as I know.
He is doing much better!This was an extremely bad accident and  he is suffering from EXtreme Boredom!

My mom is doing great. Totally back to herself mentally. She was incoherent for about 2-3 weeks  I am in charge her medical and I have her off the pain meds totally during the day and only one at night when needed.. I have her on Ensure 2x daily and she is getting really great care. Gives you some peace to know she is so much better just with a few changes. She is getting new dentures and if she has to pay more than her copay my siblings are going to help. Yay!! Life is getting better.

Lizzy has discovered Skype.  She was online with  Emma and her brother Nick for two hours the other day. Then, Aubrey another SMA friend from Louisiana. It was so cute listening to her. She is so excited.

Lizzy is doing pretty well these days but I still worried about her back and ribs. Seems everything I do is not enough  in my opinion. I work on her a few times a day and I have not given up but I do NOT want her to go through a major surgery. She is not complaining at all.  We are done with swim therapy and have to come up with more goals we need to achieve to keep her in swim therapy.

We go to Madison on the 12th  for a SMA Family Day at Madison on the 13th. Christen is going to speak on traveling. Not me. this time. Then, we come back for two days and back up there again for Lizzy's Muscle clinic. That will be the biggest plan trip we have gone this year so far. Then Lizzy, B-day week in September we will be in Minnesota visiting some close friends! We can not wait!!

Lizzy starts home school in a few weeks. She is so excited!!

How about this good post for a change!!

Thank you that have help us through the tough last few months!! Thank you Shannon and Justin for dinner !!
Thank you Barb M my dear friend for helping me get through the last few months with out you I do not know I would of got through!! Thank you to the Oltman Family!  Thank you Molly and Andy for the great Ham!! Thank you all for the prayers!! Thank you for caring!! I will be sending you all thank you cards soon as I get caught up!

August is SMA awareness Month. Please light a candle to honor the kids that have lost their lives fighting Spinal Muscular Atrophy August 13, 2011
Candlelight Memorial Event to Honor SMA Angels, 7:30 p.m. to 9:00 p.m.

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