Today our friend Tabitha will be saying her final goodbyes to her family and her life here on this Earth to be released from the crippling effects of SMA. I had forgotten that tabitha was actually the first kid we met with SMA. Riley had just been diagnosed and we were at his first clinical appointment doing his first PT eval. Tabitha happened to be in clinic that day too. Abby, the sma nurse,brought Monica, Tabitha's mom, up to meet us. Monica walked in holding Tabitha who was just a few months older than Riley. Monica, you were so bright and cheery, full if optimism an it gave me great comfort. Tabitha endured so much and possessed great courage and love. I wish that we could have gotten to know her and her family better especially since we only lived about 30 minutes away from each other. I have grown close to her through Monica's journaling of her every day battle with the disease. We will be weeping her passing in this life but she will be joyfully welcomed home by her sister Taleah who also passed away from SMA. Today is a day I hate this disease the most. To see it take lives so young, so tragically is too much for my mind to understand why. But we are unable to see the big picture and through the eternities. We can only rely on our faith and obedience to the gospel that we will too be reunited with the ones we love. Good bye for now Tabitha may your eternal life be filled with lots of running, playing, smiles and laughter.
Riley has been struggling with contractures in his ankles. While its inevitable to happen given his muscular disease there are ways to help prevent it through stretching and ankle orthotic braces. Riley's feet got so bad that we have gone through three sets of braces because by the time we get them in the mail his feet are worse and the braces don't fit. The contractures are really benign and usually don't cause pain or discomfort but he hasn't been able to stand in his stander because he doesn't have the proper braces. He has also become very uncomfortable when you manipulate his feet to dress him, move him etc. the 'cure' for this is to go in and lengthen the tendons by cutting notches in them. I know sounds terrible but for someone who doesn't walk it really is just a minor surgery. He actually had it done when he was just shy of 2 years old so we were comfortable with the process. So we woke up bright and early and headed up to the hospital. To our surprise Riley's BFF Noah happened to be there too for a routine procedure of his own. These two must be true kindred spirits! Anyway, the surgery went very well and he was in and out if the OR in only 30 minutes which they originally planned an hour. So from time of surgery to discharge was only 2 1/2 hours a new record for us! Now he has one blue and one red cast for 4 weeks and then his feet will be good as new he really is a a tough kid and endures a lot and never complains. Then again being super cute and wooing the nurses does help.