Legoland Bound!

Next Saturday we will awake early for the third year in a row and travel to San Diego early in the morning.  David's team, Robozilla, has once again qualified for the First Lego League competition there. 

 Here is David with his teammates and Team Coach and Assitant cheering on their team in the Robot game.  We are so proud of David and his teammates who have been working hard since September for this day.  During the qualifier they won two trophies, one for the Robot Game, and the other the Judge's Choice award. 

This is David as a back-up driver to Austin during their Robot game round.  They scored the highest score of the whole day in this round. 

Can you tell where our team is in the crowd?  LOL.  Melody's head is still a bit green from all our spirit that day. 

Though winning is fun, we are thankful for the time David has had in Lego League and the training he has had from some awesome coaches.  You see, at the FLL competition, the Robot Game is not the largest part of your team score.  Teams are judged on core values, robot design, and a presentation on a problem they have researched and designed a solution for. 

Judges are throughout the competition, watching how teams treat one another, other teams, and how they work together.  We are thankful for all the fun and robotics knowledge David has gained through FLL, but we are more thankful for the character and values that have been cultivated. 

In a world where athletes and the musically inclined have the vast majority of venues for which to showcase their talents, we are thankful for a competition that showcases another kind of talent.  FLL is growing like crazy and those of us who have kids with engineering and problem solving talents are very grateful. 

We are all very excited for Legoland.  We know our team will do their best in the competition and show the awesome and talented young men they are.  If you're looking for us, you can find us cheering them on with our green hair and neon green shirts.  Go, go, Robozilla. 

Blanket Ride

Remember trying to keep yourself busy after church while you parents were talking, and talking, and talking?  Well, I do, and apparently my kids know the exact same feeling.  But, they are pretty adept at keeping themselves occupied. 

Here is Melody getting a blanket ride from Elizabeth while Hannah video tapes.  Very cute and the clothes and blanket even came clean!  

Urology - More Than I Ever Wanted to Know

Who would have thought there is a special doctor just for the urinary system?  I hadn't even given it a thought until we've needed one more than we ever thought we would this year.

We actually see a nurse practitioner, and she is awesome and gives us so much more time and attention than the actual doctor can.  I asked her how she found herself in urology.  I mean, is that really anyones life ambition?  As I suspected, she just kind of fell into it and now really enjoys her job.  She is good at it, I will admit that. 

So why so much focus on pee, bladders, kidneys, ureters?  The nerves that control the urinary system are further down in the spinal column than even the ones that control the legs.  Therefore, people with spina bifida almost always have urinary system issues.  Even people whose legs work fine.

Up until this summer, Melody has been doing fabulous in this area.  However, after 3 back to back urinary tract infections, we knew something was not going well.  As we suspected, she has developed vesicoureteral reflux (VUR).  This means urine is flowing back up from the bladder to the kidneys instead of out of the bladder like it is supposed to. 

Tests show that Melody has grade 2 bilateral (on both sides) VUR.  There are 5 levels, so this is very low and means there is no swelling or damage to the kidneys.  Statistically, 80% of children will outgrow this problem within 5 years.  We are praying Melody is in that percentage.

In the meantime, Melody will under go a proceedure known as Deflux. (http://www.deflux.com/)  Basically, the Urologist will build a small "dam" in the ureters where they connect to the bladder.  This dam will allow urine to flow over and into the bladder from the kidneys, but prevent urine from refluxing back up into the kidneys. It is a fairly simple proceedure which will be done as soon as we can get insurance approval and everything lined up.

Why are we choosing the Deflux if Melody will likely outgrow the VUR?  If we don't, Melody will have to be on a low-dose of antibiotics daily for possibly the next 5 years, or until she outgrows the VUR.  There is a greater chance of repeat UTI's while on the antibiotics than there is if she has the Deflux done.  Also, there is the risk of developing resistance to the antibiotics.  Though it is likely Melody will outgrow the VUR, we need to be diligent to prevent kidney damage in the meantime.  Also, there is a high probability that we can avoid several years of not so fun tests if we go this route.  Plus, Melody just hates the antibiotic, so it is a daily battle to get them in her.

We are hopeful that this will solve the recurrent UTI issues as Melody has had a rough few months not feeling so well.  So pray with us for resolution of this issue and for downward flowing urine!

Perspective

Life is really all about perspective and attitude.  Each day I could find a lot of things to complain about, and to be honest, I often do.  There are lots of things to feel angry, sad or a sense of unfairness about.  Life really isn't fair, you know.  We don't get to choose everything about our life and all that we want it to include.  We just have to deal with the life we've been given and know that God has given us what He deems best. 

Choosing to have the right perspective and attitude is a daily choice.  Actually, a moment by moment choice.  Sometimes I get overwhelmed with the needs of my children.  5 children have a lot of needs and when you add spina bifida challenges, it can feel overwhelming at any given moment.  I have an amazing husband and helpmate, but sometimes the needs of our household can overwhelm both of us. 

What helps me keep perspective is the alternative.  I can't imagine life without any of our precious children.  The only alternative to having to deal with their needs, is not having them at all.  That thought stops me in my complaining tracks.  I know some parents who are getting through life without one of their children here anymore, and they'd give anything to have them here again.  Honestly, having a "chronically ill" child does make you realize it is not a given that you are going to outlive your children.   

Each of our children and their unique personalities, qualities and challenges has changed me, touched me, and blessed me and I am honored to be their Mom.  Without them I would not be the person I am today.  My life would not be as rich.  Is it such a joy to know them and raise them and love them.  They are talented, smart, funny, creative, thoughtful, helpful and a whole lot more. 

Since our thoughts and attitudes are so important, we are memorizing Phil 4:8 as a family.  I think maybe I need it more than anyone.  What will I choose to think about and focus on today?  It really does make all the difference. 

Phil. 4:8 - "Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable--if anything is excellent or praiseworthy--think about such things."

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!

Being Together



Joel - Kindergarten



Hannah -4th Grade



Elizabeth - 6th Grade




David - 8th Grade

We are now in our second week of school for this year.  Thankfully, it has started off pretty well.  But, having the kids gone more than they were during the summer always makes me think.  You see, many parents can't wait to send their kids off to school.  Honestly, I miss them.  Joel and Hannah are only at the Learning Center one day each week, but it is sure different without them home.  

David and Elizabeth are at school 3 day each week and complete home study on the other two.  As our children grow up we raise them in growing independence and know that being away from Mom and Dad is part of that process.  It is healthy for them.

However, I believe it is even more healthy to spend lots of time with your family and your parents.  I don't feel like I have enough time as it is to enjoy my kids and to train them.  Training takes a lot of time.  We are not to yell up our kids, or just let our kids grow up, but to train them.  Training is a process of showing and modeling to our kids how to live.  It takes a  lot of time and patience.  Sometimes I have it, and sometimes God is working on me, too. 

As I being this school year I find myself greatful for all the time together that homeschooling allows us.  It is truly a gift to be able to invest large amounts of time into our kids.  What a blessing!

End of Summer Thoughts

I love summer.  I love being with my family an making memories.  We've had a really fun summer, and I'm sad to see it end.  There is something exciting about a new school year, too, but it comes with quite a bit of organization and preparation for a homeschool Mom, too. 

This summer we've spent lots of time in our pool and had friends over.  The kids have enjoyed riding bikes which was kind of difficult in our last couple houses.  We were blessed to go to a Fields Family Reunion in Oregon at the end of July.  We extended our roadtrip abit and saw 3 of my roommates from college days and took a tour of the Jelly Belly Factory.  We've settled into our home a bit more and worked on getting back into some family routines that were neglected in our year of transition.  David started a little business and Elizabeth, Hannah and Joel completed the Library summer reading program. 

Next week our lives get back into a schedule in a hurry.  I'm ready for it in some ways, and in others I would love a few extra weeks of summer.  However, I am thankful for the fun we did have this summer.

Last night I sat on the driveway with our kids and watched the world go by.  We played a guessing game of what color the next car would be and Melody waved to all the dogs and people passing by.  We watched airplanes, birds and lizards.  The kids puttered around with various toys.  But the best part for me is that we just WERE.  We were sitting, relaxing, enjoying one another and not feeling the need to do anything or go anywhere.  I'm not so good at that.  We need to do that more often.  Even when the school year begins. 

Just being and enjoying each other.  Sitting and enjoying the world God made for our pleasure.  Those are the moments to really live for.