Cast Off Time!

TOMORROW!

The six weeks are up and tomorrow Melody gets her cast off.  I am more excited than anyone.  Even Melody is pretty nonchalant about the whole thing.

But, the reality is that now the real work begins.  The six weeks in a spica cast have been relatively easy, for Melody.  She has had to have most things done for her and she is fine with that.  But now, that will change dramatically.

Before surgery I gave the following list of hopes and prayers:

  * After surgery we would see a great improvement in Melody's scoliosis

  * After surgery Melody will be able to walk with less bracing than she currently uses

  * No complications during surgery

  * Pain levels would be manageable

  * Wisdom in navigating 6 weeks in a spica cast

  * Peace for Mom and Dad, especially during surgery. 

The last four of those have answers!
 - no complications during surgery.... other than it was very long
 - pain levels were awesome... she hardly complained of pain at all
 - we've made it through spica cast life
 - overall we've felt pretty peaceful about the whole thing.. the last 3 hours of surgery and not hearing     updates from surgery was trying, but that is behind us now.

Continue to pray about the first two.  Tomorrow the cast will come off and x-rays will be taken.  I'm not sure if we'll know how the surgery has affected her scoliosis until much later, however.  We will discuss with the doctor what Melody is released to do and contact her physical therapist to get started.  We hope to at least be cleared to work significantly on range of motion exercises.  Her legs are going to want to stay in the position they've been in. We expect to have to get fitted for new braces and all the many fittings that accompany that.

We would add to the list of prayer:
* pain levels would stay low - I'm concerned she might have more discomfort when the cast is no longer protecting her and she actually has to move her legs.
* Melody would have a positive attitude and determination as she tackles physical therapy.  It wouldn't hurt for Mom to have healthy doses of those as well.

Thanks for all your love, prayers and encouragement along this journey.  We have a wonderful support team.

Hip Surgery Musings

Will she be able to do this after surgery? 

It's amazing how time flies.  Glancing at my blog and realizing it's been 2 years since I last wrote is another reminder of that.  

It's also a reminder of how "normal" life has become.  And, maybe, an indication of how crazy busy it can be, also.  

Tomorrow Melody goes in for a rather large surgery.  Tomorrow life will be anything but "normal" and the recovery from the surgery is predicted to be long and will definitely include new routines. 

We have known for some time that Melody has scoliosis.  Her doctors have been watching it and we have seen the degree of curve increase fairly rapidly over the past couple years.  They've mentioned a back brace "24/7 until she is 16!"  We were surprised, however, when last fall her doctor said he thought the scoliosis was being aggravated by her hip displacement.  The orthopedic surgeon agreed and we found ourselves talking surgery.  

This is a departure from what we had been told about spina bifida and hips.  Most often the hips are simply left out of place, especially if the person isn't likely to walk anyway.  Surgery tends to be futile as the hips don't stay without the muscle structure to keep them there.  

 

They don't do this surgery after age 8, and since Melody is currently 8, time became a factor.

So... here we are in January headed to surgery.  The surgeon plans to create hip sockets and place both hips in a more typical position, straighten a shin bone, and release a tendon that is preventing her from standing erect.  This is a lot, but since recovery is 6 weeks in a spica cast plus physical therapy, the theory is to do one comprehensive surgery and recover once rather than many small surgeries with multiple recoveries.  

So, as we go into surgery, here is a list of our hopes and prayers:

  * After surgery we would see a great improvement in Melody's scoliosis

  * After surgery Melody will be able to walk with less bracing than she currently uses

  * No complications during surgery

  * Pain levels would be manageable

  * Wisdom in navigating 6 weeks in a spica cast

  * Peace for Mom and Dad, especially during surgery. 

Five Years!

Melody just turned 5!  It is hard to believe it’s been 5 years.  5 years seems like an appropriate age to look back and give thanks.  I am often asked, “how is Melody doing?”  Though that is a loaded question, the answer is, “She’ll always have spina bifida, but for having SB she is doing great.” 

I’ll never forget 5 ½ years ago when we first heard Melody’s diagnosis.  We had very little idea what Spina Bifida (SB) was, though I knew it involved the spine.  All the dire predictions from the doctors and the suggestion that we consider ending her life, made the future look so scary.

And then Melody arrived, and her SB was real and we could see it with our eyes, but the future doesn’t look so scary when you’re holding this:

  

Melody Annalise – 5 days old

As expected, she would have her back closure the day after she was born.  And then, a few days later, our hopes of being able to leave without a shunt were shattered, and a shunt was placed. 

But, what the doctors didn't expect was that Melody would leave the NICU at 9 days old and NEVER return to the hospital for the next 5 years.  Other than an outpatient procedure, Melody has not needed any surgeries and has NEVER even needed pain medicine her whole life. 

To put into perspective, I have heard of children with SB having up to 30 surgeries in 5 years of life.  Many live with chronic pain.  Surgeries on feet, legs, hips, and shunt revisions are far too common. Though we don't know what the future holds, for now we rejoice that, so far, Melody has avoided these.

We spent the better part of a year fussing with hip bracing in an attempt to help Melody’s hips develop properly. 

We did the “pavlik” harness:

 Jan 2010 – 4 months old

And the “rhino cruiser”:

May 2010 – 9 months old

We’re not sure whether they worked or not, but it was worth a try.  We learning Melody’s hips may always have a mind of their own, do we want to be in or out today?  But, that her hips aren’t going to keep her from doing what she needs to do.  And we are thankful that some things just don't really seem to matter much after awhile.

We are part of a special group of parents who hear the word “braces” and don’t automatically think teeth.  We’ve learned all kinds of new acronyms like AFO’s. These were Melody's first Ankle Foot Orthotics. 

Oct. 2010

And a couple years later we could show how much she had grown just by looking at her braces. 

Nov. 2012

We have spent more hours than we can count working on physical strength, therapy and exercise to figure out what Melody can and can't do and what we thought she needed.  We researched and read and asked questions.  We fought the doctor to get RGO braces we believed would help Melody walk and we silently celebrated as his mouth dropped open when she walked in them 6 months later. We are so thankful for amazing physical therapist and orthotist who walk with us on this bracing journey.

Sept. 2011 – Melody’s first pair of Reciprocating Gait Orthotics

We spent hours with Melody learning to use her new braces, though she hated them and screamed for the first two weeks.  They still aren’t her favorite (too confining), but they allow her to stand and stand up straight, walk, develop bone density, stretch tight ligaments and train her feet in the right position and many other things that walking helps.  We continue to believe that these have been the right choice for Melody.

Of course, along with fancy braces, come lots of other fun equipment.  Like. ..

Melody’s first walker.  We never knew about pull behind you walkers, but found it to be the perfect solution for Melody’s needs. We rejoice that all this equipment has been provided for Melody.  What a blessing.

Nov. 2011

Sometimes life requires a new understanding of terms and though we say “Melody can walk,” we know walking carries different meaning for her. We are okay with that.  

Though we are happy that Melody can walk at all, we accepted that the bracing and equipment required just aren’t practical or speedy enough in all situations, so before her third birthday Melody got her first wheelchair. 

July 2012 – Idaho – age 2 ¾

Her wheelchair has given her independence and speed and she is getting more adept with it every day.  At this point she never uses it at home, but it has been so helpful in public places and especially now that she has begun transitional kindergarten. 

Over the past 3 years Melody has walked further and more and with more style as she has grown older. 

Dec. 2012

Along with growing older means growing bigger which means new braces.  Casting for these babies is quite a process. 

July 2013 – Melody’s second set of RGO’s.

We’ve joined on-line groups with help us keep up with all the wonderful products out there to help Melody access and enjoy the world as much as possible. Like her first handcycle!  How thankful we are for family that all pitch in and make birthday presents like this possible.

 Sept 2013

Over the last 5 years we learned about so many things we didn’t even know existed.  We’ve navigated medical mazes and fought hard for milestones.  Our eyes have been opened in so many ways.  We can see many differences in our lives today.  But, much of the time life just looks like this.  Our beautiful daughter loving on any animals she can find, playing contentedly and just enjoying life. How thankful we are for Melody's life.

  

A beuatilA beau

A beu

Ou

We’ve learned doctors can look at an ultrasound and tell you all kinds of scary medical stuff.  But, they'll never be able to tell you about the person that little baby will become.  Until you look into the eyes of your precious child and see how unique and amazing they are.  Until you realize all that you would have missed in the colors of life if you God hadn’t given you this incredible child.  Until you watch their life unfold before your eyes, you'll never really know the whole story.  And the whole story is beautiful.  We can't wait so see the rest of it.  

Wiggling Toes

I knew today would come. 

A day I dreaded.  Something I knew would bring tears to my eyes. 

Today Melody realized she was made a little different and there are things she can and cannot do.  No matter how hard she tries.

Today Melody discovered her sister can wiggle her toes, and that she can't. 

It made her mad!  She wants us to help her wiggle those toes. 

And so we will.  We'll wiggle those toes for her as often as we can.

And we'll talk about what she can and cannot do and what WE can and cannot do. 

For, no matter how hard we try, there are just some things we can't do. 

We can focus on what we can't do, or we can focus on what we CAN do. 

And, we can wiggle someone else's toes and bring joy to each of our lives in the process.

So, go find someone whose toes need a little help wiggling, and do it!

Look How Far We've Come! 9 months in RGO's.

On September 25, 2011, I posted this picture.  This was right after Melody first got her RGO braces.  She still didn't have her walker, yet.

Then on Dec. 11, 2011 I posted this video of Melody walking in her RGO's.  At that time we had a mechanics stool that we used to follow her everywhere and assist her in her walking. 

At that time I wrote these words, "Pray for us on this journey with RGO's.  Pray that Melody will be walking independently with them sometime in the near future."

Nine months later and LOOK what Melody can do.  I just put the stool in the garage as we haven't used it in weeks, if not a couple of months.  Praise God for walking.

Here is Melody walking through our house.  She has gotten so much faster and can turn around.

And here she is going UP and DOWN a ramp.  She loves doing this, especially down because she can go so fast.

Sometimes I have to fight her to get her into her braces, but then I often have to fight her to get her out, too.  Sometimes the road ahead looks so long, but looking back and seeing where we've been certainly helps.

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. 

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. 

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!

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!

Making Strides

Melody has made a lot of progress in the past few weeks.  It was fun to return to PT and show them what Melody can do after they hadn't seen her for a month. 

More and more we're finding Melody up on her knees without any help.  She loves being able to reach more things. 

 Melody is now standing independently, once we help her up.  She stills sticks her bootie out too much, but we're working on it.  Her legs are getting a lot stronger. 

She is now crawling on all fours!!  No more army crawl, at least not all the time.  She is much stronger and can hold this position for long periods of time.

 Melody even had to show off her crawling abilities when we were taking girl cousins photos. 

 Melody really enjoys playing on my computer.  Well, pushing buttons anyway. 

And playing the piano is lots of fun as well as it gives her a chance to kick her legs.  The video shows that better. 

Getting Pushy

I know, some of you are thinking, you're pretty pushy already.

However, having a child with special needs means sometimes you have to get pushy. 

It means you have to decide what you think is best for you child.

It means you have to listen to all the "experts" and form an opinion.

It means you sometimes have to demand (nicely of course:) that which you feel is best for you child.

It means you wrestle with whether to get pushy or not. 

This week we are researching, discussing and praying about whether it is time to get pushy. 

It is not always easy to know what to do.

The whole process is very emotional and therefore exhausting for me. 

On Wednesday we will take Melody to spina bifida clinic. 

We will see several doctors, but especially her Orthopaedic doctor.

We will hear what he has to say after reviewing Melody's x-rays. 

We will see whether he is willing to sign the prescription for RGO braces for Melody. 

Then, if he is not willing, we will have to decide whether to get pushy.

At this point, I really believe the braces are what Melody needs.

Melody's physical therapist and orthotist (the brace maker) feel this is what she needs.   

I want to be open to more information the doctor may have that might change our minds. 

We want to ask good questions and make a good decision. 

If you think of us in the next few days, pray that we would have the wisdom whether to get pushy or not. 

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. 

18 months

Today Melody is 1 1/2 years old!  Here is a bit of what life looks like with Melody right now. 

 Quesidillas and smoothie for lunch.  Wearing much of my smoothie.

 

Sticker Fun.  One for you, Mommy

Disaster in her wake.

Getting into everything and not too thrilled with the word "no."

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. 

Melody Update

Melody has made lots of strides in the last month or so. She continues to crawl all over the place. In the evenings her little elbows are red from pulling herself all over. Tonight I noticed several bruises, too. She is into everything as pulls herself up and then can land pretty hard on her elbows.

She is really getting fast and sure gets mad when we thwart her efforts to get into the bathrooms, drawers, or into the boys legos. She throws tantrums by going rigid and making fists and shaking. It is really pretty funny, but we are trying not to encourage her.

This month Melody has had a head CT scan to make sure her shunt is functioning properly, which came back with a favorable result. She also saw the orthopaedic nurse practicioner who gave her an all clear on her hips. We'll return in 6 months for another followup, but it was wonderful news. The Nurse Practitioner also looked at Melody's AFO's (ankle foot orthodics) for the first time since they were fitted and said they are doing exactly what they need to be for her feet.

At Melody's checkup this month she was 22 1/2 pounds. She is on the small size for both height and weight, which we expect. Her head size is always over the 100th percentile, but that is the spina bifida and the shunt, so that is normal for her.

The most exciting thing is that as Melody does the "army crawl" everywhere, we are noticing that she is pulling her knees up more and more. She can really get her bottom up off the ground and we are working with her in a traditional crawling position as well as weight bearing on her knees. She is bending her knees now more than ever and moves more from the hip all the time.

This past month we're been back to active physical therapy twice each week. That will go through next week, and then we'll have a month off before going back to active again. It really makes a difference, especially in helping us know what to do at home. I think she has already met her goals for this month.

Her movements can be pretty unorthodox, but they are pretty entertaining, too. It is amazing how determined she can be and how creative. It is amazing what people can do. We've seen Melody grab her leg and almost throw it to get it out of her way, or where she wants it. She also has grabbed her pants to help her sit up. She'll lean over and almost dive onto her belly to get into a crawling position if she is in a hurry.

The question I am asked most often is "will she walk someday?" I truly believe along with most of the doctors and physical therapist that she will. What that will look like is anyone's guess and best guesses are that she will be 3-4 years of age before she is walking. From everything I can tell, Melody has limited (if any) feeling and movement below the knee. For the very first time this past month Melody pushed off when her foot touched the ground. This was very encouraging, but it will be a long journey to learn to walk without feeling the ground. For now it is one step at a time.

We are excited about how well Melody is progressing. So far, every goal that has been set has been attained. We'll take it one step at a time and look forward to seeing what Melody will be doing next.

Cutest Army Crawl

I can't believe it has been almost a month since I blogged last. A LOT has been going on, but I won't attempt to update everything today.

One of the most exciting things happening in our home is that Melody has learned to "combat crawl" forward. She has been doing it here and there when especially motivated to get to something. Her brother's Legos and my cell phone are two big motivators. However, until tonight I hadn't caught her on film. Tonight the motivator was Joel's dirty socks!

We are so proud of Melody and her newest milestone. Watch her go!

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.

4 months

Our Cutums

Melody is now 4 months old! It is hard to believe. She is such a cutie. Her bright blue eyes are showing no signs of changing and I often find myself calling her "blue eyes." If they stay blue, she'll be the only one with blue eyes in our family. She loves to look people in the eye and just study them. She talks, coos, laughs and interacts so much. The real fun is watching all of the rest of us try to make her laugh, though.

Our Cutums 2

Thursday morning Melody will be fitted for her Pavlik Harness hip brace. So, our adventure with bracing begins. We'll see what that all entails. Though her right knee also makes a clicking, we have been told by the PT that they will not do anything for that right now.

My new ride

A friend got this wonderful supersaucer for Melody. She enjoys it though it dwarfs her and her little feet dangle in the air. She can't be in it too long, yet, as her head is still a bit unsteady. It has a place for balls to go in the legs of it, so Joel thinks that is cool, too.

Hanging in my crib

Melody has been growing rapidly and I've begun to put away all her 0-3 month clothes and pull out the 3-6 month ones. She put on a pound and a half in one week. Last I weighed her she was over 12 pounds. She still wears the smallest socks we can find and only a few pair really stay on her feet.

Miss Crazy Hair with Elizabeth

Miss Crazy Hair

Our Bathing Beauty