The Monday before Mardi Gras (President’s Day), Jackson was home with Jon, since they were both off that day and I had to work. Jon called me that morning to tell me that one of the screws on the left hip part of Jackson’s brace was stripped and the other was loose! Keep in mind that his left hip is the “weak” one, it’s the one we have always struggled with (in fact, it’s the side the doctors believe was affected if he did have a stoke in utero) and it is also the hip that we had the osteotomy on. At any rate, since Jon is the technical one and I am the scheduler one, Jon needed the numbers to call Seattle and our brace guy, Nick (in New Orleans). I gave him the numbers and he called. Seattle Children’s was closed for President’s Day and New Orleans couldn’t order the parts (since they didn’t make the braces and insurance wouldn’t pay them for the replacement parts). On Tuesday, I was busy with Jackson and running errands, so I didn’t get a chance to call back to Seattle until Wednesday morning. Dr. Song’s nurse at Seattle Children’s (Laura) is an awesome person and immediately returned my call when she heard my voicemail. She had Peter in orthotics call us back, he started asking me questions and I had to get Jon on the call too, see he is the technical one! Ha! Peter said he needed us to send him pictures, which I did on Thursday. Peter called on Friday to tell me the brace parts were on the way. They arrived here on Monday and we called Nick to set up an appointment for tomorrow (Wednesday).
Fast forward to today: Jackson went to school and I told them that after Gayla (our PT) and I looked at them yesterday, we thought he would be fine today, but that the last screw was on it’s last leg. I told the aid this morning when I dropped him off that he could continue normal activity, but if the brace broke to give me a call. Sure enough at 10:30 am, I got the call! I talked to Peter again this afternoon and he said that Jackson was “moving more than he was supposed to be able to” and that is probably what happened!
Seriously!? I am so proud of him and thankful we have a brace guy close by! I want to take him and that broken brace to every doctor who told me what he wasn’t going to do. I want them to know that hard work and prayer is all it takes. I don’t want them to tell one more mom that their child will NEVER get out of a crib. I want them to know that AMC has never stopped this kid and it doesn’t have to stop another family! But for today, I take this as one victory on a journey of millions of victories!