RGO's - Reciprocating Gait Orthosis and Faith

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!

Standing!

Here is Melody practicing standing with her air braces.

Melody's legs continue to get stronger.  Her PT has given us some air splints to use to mimic knee braces.  They work a bit, but I'm pretty sure a hip brace will be needed as well as the knee brace. 

She tends to sit on the top of these. :) 

Her PT has scheduled a consult with the orthodics company in a few weeks, so we will see if they agree with our assessment that Melody needs HKAFO's.  (hip, knee, ankle and foot orthotics).  Currently she has AFO's.  We are hopeful that the HKAFO's will not be a permanent brace, but rather a step toward helping Melody learn to walk. 

With the right motivation, Melody really works her legs out reaching for things.  The older kids ninetendo DS, my cell phone and Joel's domino train are all things that will motivate her to push up on her legs and reach.  She has been enjoying playing with the domino train while standing at the table in the picture above.  Yesterday, when I didn't have time to help her stand, she got so angry.  Sitting by the table was NOT what she had in mind.  Now that she knows she can stand and reach and see everything. 

I tear up often when I am working with her on standing.  Just feeling her using her knees and hips is such a blessing.  In pictures you can see that I am assisting her, but you can't see how it feels when I know I'm not helping her.  I can tell she is getting stronger, too.  I can't tell you how joyful I will feel the day I can set Melody down in public ON HER FEET!  I have faith that day is coming, and what a day it will be. 

Happy Tears

In parenting there are many things that bring happy tears.  This past weekend Hannah, Melody and I had the opportunity to travel to Idaho and visit my Mom and Dad.  On our 4 plane flights and car rides, I had the chance to ride beside Melody in her seat.  Usually I am driving when she is in her car seat.  But, this was a wonderful chance to be beside her.  Melody would stick her little hand out and hold mine.  Melt my heart moments.

But, these pictures make my eyes fill with happy tears: 

I've been doing these exercises for a couple of weeks, but I've never seen it.  Melody is actually bearing weight on her legs!  Yes, I'm helping her and she can't stand independently, but this is such a wonderful step.  The still photos don't show it, but Melody bends her knees up and down and really enjoys this exercise.  It is such a precious gift to see your child do something that  you weren't sure would even be possible.  Not too long ago Melody wouldn't even respond when her legs touched the floor, so to feel her push and try and stand up is amazing.  We are so proud and we are so very grateful. 

Family Updates

There is so much going on in my life these days, sometimes it is impossible to keep it all straight. However, here are a few of the things I am asked about these days.

Melody - She finished active Physical Therapy and made great progress. We'll have a visit in December, but won't start active PT again until January. This is actually a blessing right now. Getting there two mornings a week was a challenge. Melody is starting to push up on all fours (crawling position), move herself across the floor either backward or foreward, sits and rolls over regularly. She has unorthodox ways of doing things, but she's getting it done. I have lots of exercises to do with her each day and am figuring ways to fit them into our routine and not forget them.

If we can ever get insurance issues worked out, Melody will be seeing the Orthopedic doctor for a follow up on her hips and going to spina bifida clinic for her next checkup there in December.

A House - Still no house for us. We were in escrow on one, but fell out due to the bank's failure to get us a letter on time. It came a week late. We have another offer being sent to the bank, but we have yet to see that house. It is a "subject to interior inspection" so you can't see it unless they accept your offer. We hope to see it soon. So, we will see. The market can go weeks without a any homes that fit our needs go on the market. Renting a home for awhile may become a real possibility in the new year.

My Mom - My Mom does indeed have pancreatic cancer. We are all still trying to wrap our heads around this difficult news and it's implictions. We know that she will begin treatment, but as of now, we aren't sure what that will be or when. It was caught fairly early as the tumor is blocking the liver and pancreas ducts, so Mom was turning yellow and itching all over from the build up of bile in her body. They have placed a stent for the liver to drain and given her medication to replace pancreas enzymes. Unfortunately, it is inoperable due to the fact that is wrapped around a couple arteries. Right now the goal is to get Mom feeling better. A couple weeks without sleep due to constant itching have taken their toll and her liver needs to rebound. She also needs to figure out some diet and exercise issues. Right now the cancer is isolated to the pancreas and at least one duct adjacent to the pancreas.

Travels- I will be going to Idaho this week with Melody for just a few days to see my Mom and Dad. It is important for me to see them, even for a very short time. My brother, Steve, will be there for a couple days as well and Tim, if the weather allows him to travel. In just a few weeks, at Christmas time, all our families will return for Christmas. There will be 15 of us total, so we are praying Mom is up to that by then.

Lego League - David's Lego Robotics team won the Grand Champion at the qualifier a couple of weeks ago, so we are off to Legoland in early December to watch them compete there. It is great to watch the kids work together. The competition is judged not only on the performance of their robots, but the kids teamwork, attitudes, spirit, judges questions, presentation skills and how they interact with other teams. We are proud of their academic achievements, but most importantly we are proud of the character these 10 students are showing.

An Old Fashioned Christmas- On the 7th at 7pm Elizabeth will be performing with her school in An Old Fashioned Christmas. She is so excited to have a solo and has been practicing Christmas songs for months. I love to hear her singing loudly and proudly around the house. If you want to come see her, let me know as tickets are limited and I have to buy them next week.

Crafting - Hannah chose crafts as her elective in school this year, so she is having a blast. A huge box of crafts arrived recently and she would have them all done by now if I would let her. We are saving some of the smaller ones for the trip in the car to Idaho at Christmas. Now we just need a house so we have a place to display them all.

T-Ball- Joel has 2 more t-ball games left and the season will be over. I'm not sure how much he has enjoyed it, but he has been a hoot to watch. Of course, the snack after the game is the most exciting thing for him. We're trying to figure out if he is left or right handed, so that has been a challenge as he switches. If I can get it off my phone, I have a picture of him in all the catcher's gear. Very cute.

Sitting Pretty with my New AFO's

Today we picked up Melody's new AFO's. These are her ankle foot orthotics which will help her feet not to "drop" and give her the support she needs to stand. We picked the butterfly pattern and they really are kind of cute.

The problem right now is they slide right off because of her little chubby legs. So, now we need to go shoe shopping. I think the shoes will help them stay on. I haven't bought shoes as I have been waiting for these to get finished. The orthotics company said they will adjust them to fit into her shoes once we have some.

One postive thing I've noticed is that she is bending her knees in order to try and reach her AFO's. She rarely bends her knees, so if these encourage that kind of movement, that will be a bonuse. The OT wants her to start being more aware of her feet, and having something on them certainly increased her awareness of them, at least by sight.

PT and OT and we're OK

Melody is now in the midst of 4 weeks of "active" physical therapy. This means we go 2 mornings a week for PT and one for occupational therapy. Thankfully, OT is right after PT so it saves us a trip. Both the therapists are great, so that is a blessing. We have been through bunches of evaluation and just had Melody's yearly evaluation with the Early Intervention program. They also send a teacher out to our home once a week. So, three mornings a week Melody is hard at work.

All this hard work is definitely paying off. We are working on core strength and today Melody was laying on her belly and pushed herself up to sitting with her arms! We improve her trunk strength by having her sit on a therapy ball and reach for things as she balances. She has pretty good strength already but mostly just loves to bounce on the ball.

The assessments all want to know if Melody waves bye-bye. She has just started doing that some. However, she has been giving high fives much longer. She finally has a word, "hi" and boy is it clear. She babbles a lot, but this is the first one you can identify in context. She has begun clapping her hands, too. At Disneyland last week she was clapping for the Aladdin show and all through It's A Small World she "danced" in my arms. She rocks back and forth in time to the music.

In therapy they give her lots of toys to play with, but true to her personality, Melody is more interested in all the people there. If someone walks by or talks in the hall, she is distracted from her activity.

I have stretching activities to do with Melody's legs daily as well as sitting up and rolling over exercies. She is getting pretty strong and able to roll over, however, the biggest hindrance is when her legs go straight out to the side making it impossible to roll over. She still doesn't like being on her tummy unless it is for sleeping, but she is getting better and stronger. She pushes herself backward with her arms.

She is pretty determined, so when she wants something, she'll work for it. Trying to get her to want the same things the therapist wants is sometimes a challenge, though.

Therapy is a lot of time and a lot of work trying to keep up with our home exercise routine. Sometimes it can be overwhelming, especially realizing this is a long term activity, not a short-term one. However, we take it one day at a time and are thankful for the progress she is making.

Sitting Up

One of the skills we're working with Melody on is sitting up. She can sit for about 10 seconds, but isn't sitting fully on her own, yet. She is really wobbly and we are working on getting her legs in a good sitting position. She likes them sticking out to the side like the brace kept them.

She has learned to put her hands down when falling forward, so that is good. She used to just go right onto her nose. She is very flexible and I'm not sure that helps her stay up. She can put her left let almost flat against her body and suck on her toes.

Elizabeth took this video of Melody working on sitting up. Enjoy.