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
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
2 comments:
Hi
my name is Jenna and i came across your site. Lizzy is an amazing, beautiful, courageous strong and determined fighter. She is a beautiful princess with a very pretty smile. She is a brave warrior, smilen champ and an inspirational hero. Lizzy will be in my thoughts. i was born with a rare life threatening disease. www.miraclechamp.webs.com
Thank you so much Jenna for you kind wonderful words!! You are also beautiful, courageous and strong!! Lizzy and I will read your web-site.
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