Ortho Visit today(Spinal Muscular Atrophy Type 1)

We got up early today and actually got on the road with time to spare.( we thought any way...) We ran into ROAD Construction. Its takes us a bit over an hour to get to where we go for Lizzy's fittings for her TLSO and AFOS In Peoria. Well, today there was ROAD Construction EVERY where... UGH ... Lizzy was throwing a major hissy because she was bored. We got there on time but on by a few minutes. Paul went with us today because we had to take Lizzy's power chair so Tony (Plattners Ortho) could see how her TLSO fits her sitting down. The newest TLSO just did not fit right and the AFOS were too tight in the legs. Lizzy has gained muscle mass to every one's surprise. (hmmmmmm Is it the oral albuterol or the donor breast milk?)So, we thought we would have to get new ones and wanted them soon because Lizzy's curve has not changed in the last year and that is a good thing and we want to do anything we can to keep her that way. She wears her TLSO and AFOs all the time. She does not get in her chair with out her TLSO on.
She is getting kinda of tight in her knees and I am doing all I can to keep her from doing so but... I NEED help so Tony is going to figure out something a bit better than a knee immobilizer and get back to me. We are going to work on her hands also. I am trying so hard to keep Lizzy from getting contractures not I am not an OT or a PT and do the best job I can. It really sucks that we have no OT/PT in the area that wants to take on Lizzy. We are still working on Easter Seals. Christen had a HUGE packet that she got last week and just finishes it and will be sending it out in the morning. Lizzy needs swim therapy badly it shows how much it helped her before.
Any way , Tony modified her TLSO and her AFOS hopefully it will get us through the Fall winter months. Thank Goodness. Now with that done I am getting everything else she needs taken care of like new hand splints and elbow bracing. Its great Lizzy is growing but I just wish is was not so darn fast!! After we got out the door Lizzy took off in the parking lot(Thank goodness it was not busy )and ran off from us Laughing and giggling. Finally, we talked her in to going back to the van with the bribe of McDonald's French fries. We do not usually let her get away with this but hey she is just a kid and needs to have fun too.

We have a assistive tech/communication appt at ISU on Thursday. They can help us there with so much and we are very excited about this. Only problem our appt is at 10am (Oh my gosh) we have to find it and we have to be in Bloomington early . We can do it... but will Lizzy cooperate? LOL


Special Prayers to Christen friend Melanie and her family. Her Father passed away this past week-end and he has been battling Colon cancer for a long time. He lived a lot longer than they expected. He fought hard but in the end he went at home with his family. Sad... Joan- Marie (Melanies's Mom) will be lost with out him. Three of my girls are going to the memorial service. Paul and I are babysitting.

Many prayers for all that need them.

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