Spina Bifida Clinic

In January I took Melody to Spina Bifida Clinic.  She goes every 6 months, so we hadn't been since July of 2011.  It was very encouraging, in fact it was just what I needed.  You see, sometimes I get caught up in the day to day challenges of managing all of Melody's needs along with the needs of the rest of our family.  It is difficult to see the big picture sometimes.  It is hard to see how far we've come. 

However, the nurses, doctors and all the staff at SB clinic hasn't seen Melody in 6 months.  When you see their response to Melody, you realize how far we've come and how all the hard work has paid off.  Everyone was amazed with her progress.  She strutted her walking stuff up and down the hallway and the clinic was running really late that day, so she had a lot of time to do so. 

The best part was watching the face of the Orthopedic Doctor as Melody walked into the room with her walker.  This was the doctor that said he didn't think the RGO braces and walker would work.  He looked at Melody and looked at her chart, then back and forth several times.  It was priceless.  Though he didn't say much, I could see the surprise in his eyes.  He told me something like, "two-year-olds don't usually figure out all the things necessary to use a walker & braces."  I responded, "well, she is very stubborn."  His response, "I wonder where she gets it?" as he looked at me.  I laughed.  The doctor and I really do get along and I understand where is is coming from, even if we don't always agree. 

Melody's check-ups with the Neurologist, Orthopedic, Pediatrician and Urologist were all positive.  Her kidneys still look great (she has a kidney ultrasound every six months) and since she has been urinary tract infection free since her surgical proceedure in December, we are hopeful it has solved the urology issue for now. 

We got the paperwork signed and hope to be getting handicapped parking permits soon.  Now that Melody is getting out of the car and using her walker from the car to wherever we are going, I am finding that I need them. 

The thing I love about SB clinic is seeing all the doctors in one afternoon.  I think we walked away with 3 other prescriptions and paperwork things we needed.  Those each take quite some time to get when you have to got to several different doctors. 

All in all it was a productive day and a source of great encouragement to me.  I know it really doesn't matter what other people think or my daughter, we love her no matter what she does or does not accomplish.  However, it is a blessings to see her celebrated by the health professionals that are invested in her life.  It does a mother's heart good. 

Thinking About Jesus More than Myself

Two weeks ago during our evening family worship time,  Joel made the decision to follow Jesus.  For as long as Joel has been able to express his thoughts, his spiritual insight has been pretty profound.  Up until now, he has always said he wasn't ready to committ to following Jesus.  We tried not to pressure him, and his reasoning was pretty clear, I'm not ready, yet.  I will when I'm ready. 

We were discussing milestones from previous years and recording what God has done in our family in the last couple of years.  As we re-read these milestones we discussed when the other children made this important decision.  Joel said, well, how about I do that tonight. 

We asked him what that means and he said, "It means thinking more about Jesus than about myself."  I thought that was pretty profound.  Thinking about what Jesus wants instead of what I want.  Following Jesus' way instead of my own.  I think he has a pretty good idea of what it means to follow Jesus. 

A little while later he offered insight into why he hesitated to make that committment before.  He said, "Mom, when I first wake up, I'll probably think about me, but then I'll think about Jesus."  I realized in that moment that Joel had a lot more insight than I thought.  See, he knows how hard it is to focus on Jesus.  How easy it is to think about ourselves and do things our way. 

Joel's next question was, "Can we do that community thing?"  We laughed and then had communion as a family with bread and Capri Sun juice, which was the only juice we had on hand.  We celebrated with ice cream a few days later. 

We know that following Jesus is not a one time event, but a series of decisions over the course of a lifetime, but we are grateful that Joel has made the decision to start.  What an incredible blessing to see our children walk in the ways of the Lord.  It is our prayer that their committments will last a lifetime.

Walking!!

Melody is taking several steps on a regular basis with her walker now.  It is a lot of work, but she is doing it.  One of her favorite sentences is, "I Walk!"  She leans back and forth when she says it, because that is how she walks. 

If you can stand all the cheering and encouraging from Mommy, here is a snippet of what Melody is doing on a daily basis.  She is walking for a lollipop.  Notice how fast she walks at the end, the closer she gets. 

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."