It has been a little over a week since Melody received her RGO's. There were two fittings before that and they have actually been adjusted once since this picture. The biggest adjustment is that they are now lower on the sides, under her arms. We are working daily with Melody in these braces, and overall she is adjusting well. Our current goal is to have her in them at least 1 hour/day. We usually do that in two 30 minute sessions. Melody cannot stand or move in them independently, yet, so the entire time she is in them, someone has to be with her.
We hope the RGO's will help strengthen Melody's legs and help her to walk someday. The biggest thing they are helping with is her hip flexor muscles, which are very tight from the fact that she has been sitting much of her life. The entire time she is in the braces those muscles are being stretched. In the RGO's Melody stands straight, for the first time ever. It brings tears to my eyes as it is the first time we've really been able to tell how tall she is. It makes her look so much older.
Melody loves to be outside, so we put on the braces and walk around outside. For now it is a great strain on my back. Hopefully, in a few days we will have a walker for her to lean on, which should help. Melody is enjoying being able to reach the door knobs, play in her little kitchen and push her doll stroller. She likes to stand up right in front of the tv and watch a show and be able to reach things previously out of her reach.
I've noticed Melody has gone wild in the past week. Even with the braces off she has discovered a whole new world opening up to her. I'm not sure if it is the muscles being strengthened or her awareness of what she can do. But, Melody now crawls more on her knees, gets into a bear crawl position (on her hands and feet with her booty in the air), and "dances" by rolling around on the floor. She has even tried to stand up and push her stroller without her braces on. She made it up onto one foot and knee!
Her social development is taking off as well. I truly believe that getting her up off the floor and not being held changes greatly the way people interact with her. I see how she is treated like a baby when she is on her belly. But, get her up and people talk to her differently. Her vocabulary is exploding, which I believe is part of the development process. This morning the ABC song was on and Melody said "J" (jah) and "mmm" at the appropriate times. I find it hard to believe it is coincidental.
Melody can walk reciprocating her legs when she does not have her RGO's on. It is hard for me to tell if she is able to do that with them on. They are heavy and take some getting practice to figure out how to use. We hope she'll be doing it on her own, soon.
Many ask us what the goal is with the RGO's. The doctors really believe Melody will be walking with braces like these the rest of her life. It is possible the bracing will be somewhat less that it currently is. It is possible it will always be the same. The answer is, we really don't know. We know the braces are helping muscles and bone strength and development. Standing up daily is better for all body systems, but especially helpful for Melody's bowels, bladder and circulatory systems in addition to the skeletal and muscular strengthening. We know that it is stretching her hip flexors and allowing her to stand erect for the first time.
We do know that statistically, if someone uses a wheelchair for a few years, they NEVER get out of it. Melody will likely use a wheelchair in the future, especially for long distances, but we want walking to be an option for her if at all possible. We are committed to working with her and I must admit it is not easy. Finding about an hour and a half in my day to work with Melody in her braces is a challenge. But, we are making it work and the other kids are a big help as well. They can hold her when I need to do something else for a few minutes. It is a lot of work for Melody, too. Sitting would be easier, but we are committed to pushing her to doing all she is capable of and with her strong personality, we think that is a lot.
Pray for us on this journey with RGO's. Pray that Melody will be walking independently with them sometime in the near future. We know that what man may think is impossible is nothing to the One who made Melody and can easily accomplish the impossible in her life. I love the song by Kutless, "What Faith Can Do," where is says, "it doesn't matter what you've heard, impossible is not a word, it's just a reason, for someone not to try. . . That's what faith can do." Praise God for faith!
