Pictures above are of DR. Schroth, Lisa ,DR. Wang and Lizzy at the 2009 FSMA conference in Cincinnati . We left for the FSMA conference on Thursday morning. We left home and it was spring and come back to HOT SUMMER weather on Sunday here.
Lizzy was pretty hyper with so many people in one place. It was great to see our friends , Lizzy's and meet new friends. Lizzy did have some issues while there which were out of the norm for her baseline She plugged on Saturday and was very choky both Saturday and Sunday but she is fine since we are home. She scared the bjeepers out of everyone when she had to get out of her power chair and get a cough because she had just had a taste of pizza sauce and it made her quite choky. A couple coughs and she was fine. I think the motel was very dry and hot but it was a very nice motel. She did great traveling.
We went to DR.Schroth's workshops and me ...... could not keep my mouth shut as usual. I just think I can save them all and I have to get over that. I told one parent who complained about the bipap that if he did not use the bipap he could kill her if he did not put it on her. She is a type 1 and type 1s need the bipap to keep their lungs healthy and help them get stronger. Ooops.... my heart over rode my mouth again. Another parent who was ignoring their daughter who had a plug I kind of told them their child needed a treatment. Some parents just do not "GET IT" even after months after being trained to take care of their child and it makes me so mad I could scream! These kids were so precious and so fragile. They need pulse oxs on (when they are little and can not talk and always when they sleep) and cough machines and suction machines close ALWAYS in my opinion. Lizzy had a pulse on 24/7 until she was almost 4. When she travels and is sleeping she always has a pulse ox on and all her machines very close.
It sounds great about all this stem cells research will . The babies that are going to be in the trials for stem cells have not been born yet.
Got some news. We probably will not be able to fly to CA in July. UGH.... NEW DOT guidelines. We have to go to keep Lizzy on the med we have no choice. So, we have to come up with a fundraiser very quickly to get enough money to drive out there. I hope we can do it. WE will not take Lizzy off the med no matter what. So, keep us in your prayers that we can get this all figured out. Some how this will happen.
Many prayers for the sick kiddos and to us finding the $ to drive to CA for the July 21visit with DR. Wang.
We believe in miracles because we live with one.
www.our-sma-angels.com/elizabeth
1 comment:
it sounds like you had a wonderful time, I have sure enjoyed seeing all the pictures, and I dont think you say to much, no one ever tells people how it really is, and to be frank, they need to be told, so Good Job!!!!! we will be going next year, even if it means I have to start saving for the trip now. hugs Sheila
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