Travel Thoughts

We just returned from a driving trip to Idaho where we had a wonderful, memorable and blessed Christmas with my family. Here are a few things I noticed along the 18oo or so miles we traveled.

- The Red Box policy of returning your DVD's to ANY Redbox location is genius for the traveling family with a DVD player.
- A one-year-old in the van means you'll hear desperate screams every so often that one can only surmise mean "get me out of here!"
- Catheters every 4 hours rise to a whole new level of challenge when you are traveling through rural Nevada, Oregon and Idaho in the dead of winter.
- When over half of your family are children ages 12 and under, your time together is bound to be loud and lively.
- Family pictures with a one-year-old, two-year-old, three-year-old and four-year old will challenge even the best of photographers.
- Our Idaho friends may think we're crazy for living in Southern California, but we're not the ones sitting in over three feet of snow right now.
- A Ninetendo DS for Christmas and new games is a great gift for children about to be sequestered in a van for 18 hours.
- Children of all ages will watch Baby Einstein if contained in a moving vehicle for several hours.
- Parents' grand plans of making a "quick stop" for lunch or dinner were thwarted when they decided to have 5 children to feed, exercise and use the facilities.
- Snow is beautiful and lots of fun, but I can't say I'm sad to leave it behind.
- When your children who sleep on the floor at home complain about the beds in your overnight accommodations, you know your pickins were pretty slim.
- A community and church who provide meals for a family of 15 for a week leave you feeling amazed, humbled and abundantly blessed.
- Cancer may take your health, but it will never take your faith!

No matter how long the journey, it is always worth it to see your family!

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.

All the Days of Our Lives

There is a verse in Psalms that says, "Surely goodness and mercy shall follow me all the days of my life and I shall dwell in the house of the Lord forever."

All the days.

Not just the good ones.

All the days.

The day when you sit in an ultrasound room and the doctors say "spina bifida."

All the days.

The day when you hear your mother has "pancreatic cancer."

All the days.

The day you learn the cancer is "inoperable."

All the days.

The day doctors say "3-4 years with treatment."

All the days.

It is in the midst of these life altering and heart breaking days when I sense the goodness and mercy of the Lord.

My heart still aches, the tears still flow, I still get angry and upset.

Yet, despite it all I feel His goodness and mercy following me even in these days. His peace in the midst of it all.

All the days.

"Surely goodness and mercy shall follow me all the days of my life and I shall dwell in the house of the Lord forever." Psalm 23:6

Getting Away!

Kevin and I are getting away for a couple nights. 48 kid-free hours! We'll be staying close to home, but are looking forward to the time together. This is the first time we've been away since Melody's birth. We plan to do Disneyland tonight and go on a few rides the kids don't care for.

Pray for our kids while we are away as well as the caregivers who will be helping out for the next 48 hours. There are 6 people, including Grandma Allen that are helping to make this weekend possible. Words cannot express how thankful we are for these wonderful people in our lives.

Getting ready to leave for a couple days teaches you a few things, or maybe just reminds you what you already know. Either way, here are a few things I've discovered:

1) Writing a schedule of all that needs to be done in 24 hours makes a long list.
2) It is very hard to think of leaving my baby with all her special needs.
3) As hard as it is to leave Melody, I know this is one of the many steps toward independence that she and I will take over the years.
4) This is one of the many times I wish we lived closer to my family.
5) Our church family truly is an amazing family to us. The things they do for us are truly humbling.
6) You know you have true friends when they will learn to do a catheter for you.
7) Give your kids a chance to spend the day with Grandma or friends, and they won't care that you are going away.
8) Getting ready to leave is exhausting.
9) The thought of time alone with my wonderful Husband is wonderful.
10) You know you have 5 kids when the thing you're looking forward to most while you are away is uninterrupted sleep.

Trick or Treating

Halloween is such a fun time of year. As our costume box is in storage, we had to come up with all new costumes and try to do so fairly inexpensively. I think we spent under $20 for all 5 kids, so I think we did pretty well. We had a Winter Fairy A Sniper (against my better judgement) Oh, and this picture is taken AFTER I shrank his sniper hat to Melody size, so he looks less imposing than originally intended. That is the down side of having a youth group party a couple days before Halloween.

A pirate, though we have a pirate a lot of the time. He was making "pirate faces" for me and I rather like this one.

I still get to choose one costume, thus our adorable little Mermaid. I found the costume idea online and Elizabeth's keen eye for fashion located the fin fabric leotard at the thrift store. Melody even won 2nd place for her costume at Kevin's office Halloween party. She looks forward to spending her gift certificate.

Daddy and his little Mermaid

And to finish it off we had a Barbie. She created her own costume and originally was supposed to be a "Sparkle Princess." Then for school they had to dress as a book character AND bring the book. So... thus the Barbie Princess which we had the book for. I think the costume was really just an excuse to wear eye shadow loudly and proudly for a few days. One of the best Halloween choices we made was to attend the Halloween party at Daddy's office where there was a pumpkin carving contest. We didn't "win" any prizes, but the fact that our girls got to carve pumpkins and I didn't have to buy them or clean up the mess was a win! They boys had no desire to get creative or messy.

The worst Halloween decision we made was to try and go to The Grove church's Trunk n' Treat event. We live a stone's throw from there and the kids had been seeing the signs for a month, so they wanted to check it out. I have heard there was over 10,000 people there and I was underimpressed with the organization. It was basically mass chaos for very little candy. But, we have given the kids a very vivid demonstration of why we will avoid it in the future.

The other best decision we made was to go Trick or Treating with our friends in their neighborhood. Several other friends also joined in. The kids were hyped so we walked over there and Daddy met us there with the van so we didn't need to walk home. The kids had a great time with friends, brought home way too much candy and we all had a great time with our friends.

Sitting Up Skills

Melody decided to show off for the camera tonight. Her flexibility is pretty incredible. Go Melody!

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.

House Update

Today we submitted our 8th offer on a house. Pray for God's will and timing in finding our new home. I must admit I am getting anxious. I had optimistically hoped we'd be moved by now. The number of items that are "in storage" that we are finding need for is growing. Our costume box is in storage, so this month we are trying to make new costumes inexpensively.

Finding the home we are looking for is not easy. Single stories are not as plentiful in our area, especially with at least 4 bedrooms and in our price range. We can drive by many of them and not even have to go in to know they won't work for us. Too hilly, or too many stairs to approach from the outside.

The house we just placed an offer on I really like. However, it is in a high tax area and doesn't have a pool. So, we are trusting God to show us His will. We do not have the money saved we would like to at this point, so we may have to just trust that God will give us the ability to put a pool in later.

Continue to pray with us that God would allow us to buy a home that will meet the needs of our family. Pray that we would not grow impatient, but that we would lower our expectations if that is what we need to do, too.

Confessions of a Spina Bifida Mom

If my blog is silent, it sometimes means I'm struggling and don't know how to put my struggles into words.

I am accutely aware of my daughter's abilities and inabilities. However, seeing the physical therapist write it in black and white is still discouraging.

Acceptance is a continual process.

God doesn't ask me to understand, He just asks that I trust Him.

Whenever my daughter is overly fussy I worry that something is wrong with her shunt.

A Mother's love is amazing. It doesn't matter what you child is like physically or mentally, you love them desperately anyway.

Massaging my daughter's feet and realizing she probably doesn't feel me at all makes me weep sometimes.

Once I probably said with so many other people that all that matters is that I have a "healthy baby." Once I probably said, "as long as my child has two working arms, two working legs and 10 toes, that is all the matters." Now I know that those things don't really matter either.

It is extremely hard not to worry about how you'll be treated by others.

It is impossible to imagine being kind when you are mistreated.

I wouldn't trade my SB daughter for anything.

I'm learning to live one day at a time because more than that can be overwhelming.

I cry with you as you cry during your physical therapy exercises, but I'll do them anyway because I love you.

I am abundantly grateful for the multitude of people who love on my SB daughter and see her for the treasure she is.

Stroller Straddle

I just had to take this picture as it is so typical of a stroll with Melody. You can see why she gets lots of stares while we're out and about. Most people comment on her flexiblity or how relaxed she is. Only one person asked me, "what is wrong with her?" and I was very controlled. That person still lives. :)

I often put her legs into the stroller, or straight in front of her, but she moves them right back. Ever since the hip braces, this position is evidentally more comfortable for her.

Tomorrow I will go in to hear the final report from PT and hopefully get her physical therapy sessions scheduled. Melody's AFO's (ankle/foot orthotics) are fitted, they are just waiting for authorization and then they will mold and fit them.

Sitting Up!!

That's right. Melody is just over one year old and she is sitting up by herself. I must say it is WONDERFUL. It is nice to be able to set her down somewhere and she is having a lot of fun playing. She is making lots of strides in reaching and catching herself and pushing herself up as well.

Here she is, showing off for the camera.

Giggle Box

One of our favorite forms of entertainment is trying to make Melody giggle. David is hands down the best at it, however. Joel does get into the act on these videos, too. Enjoy the laughter.

Our God is Able

Lately I have beeen meditating frequently on several verses in Daniel. I was reading a blog of another Mom who recently discovered she is pregnant with a baby with spina bifida. I was challenged by her thoughts from Daniel.

I've heard the story of Shadrach, Meshach and Abednego my whole life. You know, the guys who were thrown into the fiery furnace and survived. But, recently their words right before they were thrown in the furnace have stuck with me.

In Daniel 3 Nebuchadnezzar is furious that they won't bow to his statue. He says to them, you realize if you do not worship the idol I have set up that you will be thrown into the fiery furnace. He follows that statement with a question that I'm sure was meant to be rhetorical. "Then what God will be able to save you from my hand?"

However, Shadrach, Meshach and Abednego are bold enough to answer that question. They know THE God that can save them from the angry, arrogant King. Their response is what challenges me. Daniel 3:17-18 records their response, "If we are thrown into the blazing furnace, the God we serve is able to save us from it, and He will rescue us from your hand, O King. But, even if he does not, we want you to know, O King, that we will not serve your gods or worship the image of gold you have set up."

It is the "but..." that follows that I contemplate. Yes, my God it able. My God is able to heal Melody from spina bifida and the physical challenges she faces. But, even if He has not, even if He does not. I will still serve Him. Before Melody's birth we prayed for healing. We hoped the doctors were wrong, despite excellent medical care. I know there was a certain knot in my stomach feeling when I saw her spinal lesion for the first time and realized it was really real and God wasn't choosing to heal it. Yes, my God is able to heal, but so far he hasn't chosen to heal her completely.

It is easy to serve God when things turn out the way they I want. Yet, will I serve Him when I don't understand why? Will I serve him "even if He does not?" I believe the three men in Daniel were willing to serve God either way. That is called faith. Will I trust that God has a plan for Melody's life and my life that includes spina bifida? Will I choose to believe that she is "fearfully and wonderfully made" even if she doesn't meet the world's standard of physical perfection?

The God I serve is able. But, even if He does not, yet will I serve him.

1 Year Old

Melody Then ..........

and Melody now! What a difference a year makes. Happy First Birthday, Melody. We love you!

One year ago today our precious Melody was born. I was in an operating room with a wonderful anethesiologist, a very eccentric OB and a bunch of other people. Melody was taken via c-section and I was only given a fraction of a second to see her before she was wisked away. She was through the "window" to the waiting neo-natal intensive care team before she even began to cry. My ears were straining to hear that sound and the feeling of relief was great when I heard her little cry for the first time.

We were finally able to hold her late the same afternoon she was born and she was stable enough for her spine closure surgery the morning after she was born. I'll never forget looking at her spinal lesion and asking the doctor what exactly we were looking at. When he said "that is her spinal cord" and I realized there was very little covering it, I was filled with greatfulness that her SB was discovered before birth and more damage was not done.

Melody came through her first surgery with flying colors and then fluid started backing up on her brain, which was a high possibility for SB. So, 6 days after she was born she had surgery to have a ventricular shunt placed. A second surgery which she handled very well. Then, 9 days after she was born we were able to take our little bundle of joy home. That was a wonderful day.

It is hard to believe Melody is a year old. We haven't been back to the emergency even once. Our only trips to the hospital have been for Melody's routine kidney ultrasounds and her hip ultrasounds. She has been to Spina Bifida clinic 3 times and lots of other checkups, but nothing urgent. I have talked with parents whose children have had up to 12 shunt revisions in the first year of life, so we are very thankful. It was possible this year would have been filled with hospital stays, we are thankful it wasn't.

Melody is such a joy to our entire family and we might just be accused of spoiling her. She is generally happy and content. She does have a piercing cry which she uses to be heard above the hubbub that is constant in our home. I want to sleep or eat are generally her complaints. We give her the "Sharpie Solution" when she is fussy in the car as a permanent marker pacifies her. We may just be gluing the lid onto one, soon. The whole family sings the "Melody" song to calm her. It is one we made up, "Mel-o-dee, Mel - o-dee, Mel-o, Mel-o, dee, dee. . ." sung to the tune of "Adelweiss" from the Sound of Music.

Bumbo Bliss

Melody still cannot sit on her own, which creates a few challenges. I did not purchase a Bumbo seat as she couldn't use it with her brace. However, I had heard that they were wonderful. Then, I thought Melody will be sitting on her own, soon, so I should save the money. However, I realized one would make us both very happy for the next few weeks until she is sitting on her own.

So... I asked my awesome MOMS Club friends if i could borrow one, and had three offers within an hour or so. Melody loves it! I'm glad I was able to borrow one. I'm hoping it will also help her legs as it holds them in a straighter position. They still like to stick straight out to the side like they did in the brace and we need to work on that.

Here she is in all her Bumbo Bliss.

Back to School

The 2010-2011 school year is now well underway. We just completed our second week of school and it is going well. I was dreading it starting as my life generally gets busier when school begins, but it has actually been going very well.

Our children continue to be enrolled in River Springs Charter School. This year, however, Hannah is the only one I am homeschooling and responsible for her learning. Hannah is in 3rd grade and is an incredible student. She attends RSCS Riverside Student Center on Tuesdays where she gets to take four workshops: American Girl, Art Meet the Masters, Photography and Adventures in Music. The other days I have to scramble to keep up with her as she willingly asks for more school work. We are enjoying a unit on Little House in the Big Woods and just bought ingredients to make our own cheese.

Hannah - 3rd GradeElizabeth - 4th Grade
Elizabeth and David are enrolled in RSCS's Mosaic program. They attend classes on Monday, Wednesday and Fridays. They do home study days on Tuesdays and Thursdays. This allows our entire family to be home on Thursdays which is also Kevin's day off.

Mosaic was not their first choice, they wanted me to homeschool them as well. However, for a variety of reasons we felt this was best for this year. Elizabeth comes home from her days at Mosaic just beaming, so despite the fact that she won't admit that I was right and she does like it, I know that she does. She is doing well with her schoolwork despite having informed me that "having the right outfit" ready for the next day is more important than having her schoolwork finished.

David - 7th Grade

David has become so responsible and independent with his schoolwork it is a joy to watch. He has been finished with his work most mornings with very little prompting or help. He has begun Algebra this year, which he is apparently ready for, but I am not sure I am. Helping him with questions is getting much harder.

Of course I try to spend lots of time with Joel and Melody as well. Joel really wants to be in school, too. He has some preschool books that he loves to do and Hannah is always happy to teach him. He has a good grasp of his letters and sounds. He will be starting T-ball soon and he can hardly wait.

Melody has had her evaluation for Occupational Therapy (OT) and Physical Therapy (PT). We were very happy that she does not currently need OT, which is what we expected. However, as soon as their finished writing her plan up, we expect to start PT in earnest. That will take a big chunk of our time in the next few months. While playing with her I spend time working with her legs as best I know how and look forward to more direction from the PT.

Not My Mommy 4!

My Mommy did not put her cell phone in the same stroller pocket with the water bottles on our morning hike, not MY Mommy!

My Mommy's cellphone is not currently sitting in a bag of rice drying out for my Mommy, not MY Mommy!

My Mommy did not spend part of her day hosing down a pee soaked rug and hanging it out to dry, not MY Mommy!

My Mommy did not forget one child's eyedrops dose and decide, "oh well, three doses a day, four doses a day, same difference, " not MY Mommy!

My Mommy did not put her littlest angel to bed with two bruises in almost the exact same spot on her forehead due to accidents today, not MY Mommy!

My Mommy did not stay up late planning school lessons for the month when she had all summer to get ready, not MY Mommy!

My Mommy did not look at her sons shoes and notice great big holes and realize she forgot to buy one of her children new shoes for a new school year, not MY Mommy!

My Mommy didn't just stick a piece of pizza in her daughter's lunchbox for tomorrow instead of a healthy lunch, not MY Mommy!

My Mommy is not feeling sentimental about her children starting 7th, 5th, and 3rd grades tomorrow or her baby quickly approaching 1, not MY Mommy!

Remembering Grandpa - Walter Louis Coats

Grandpa Walter Louis Coats with Elizabeth - 2000

Last Tuesday Melody and I flew to Idaho for my Grandfather's memorial service. Grandpa went to be with his savior after 97 years of life. He had lived at home until just a month before his death. It was such a blessing to be there to celebrate Grandpa's life.

The Memorial services were Thursday, Aug. 12th. The graveside was first and we drove down from Midvale with my parents for that. As we drove into the cemetary and I saw the casket adorned with flowers, I got a sick feeling in my stomach. Though I already knew Grandpa was gone, that sight somehow made it a reality. The casket was simple and seemed very fitting for Grandpa. The service was short and fitting as well. We sang Amazing Grace and Grandpa's pastor gave a short message. The pastor made a comment about Grandpa's use of Absorbine Jr. to heal his body both inside and out, which received much laughter. Grandpa was known for his Absorbine.

Melody and I at Grandpa's Graveside

A Memorial service was held later that afternoon at Grandpa's church. My parents had put together a slide show of Grandpa's life and it was fun to see those many years of memories before the service began. We sang "Mansion Over the Hilltop," "How Great Thou Art," and the Pastor sang "Life's Railway to Heaven." I love to hear the hymns that were beloved by my Grandfather.

There was quite a number of people there to remember Grandpa. It was a tribute to the many lives he touched. Grandpa didn't just love his family, he and Grandma loved on others as well. I enjoyed seeing cousins I haven't seen in over 10 years. 7 of the 10 Grandchildren were in attendance and 14 of the 36 great-grandchildren were there. We were also blessed by the many family friends that came to remember Grandpa with us.

At the close of the service was a sharing time which was one of the sweetest memories of my time there. To hear people share their memories of Grandpa. One story was told of some men in Grandpa's church going to Grandpa's house to deliver wood. They thought Grandpa was standing too close to where the trailer was driving by and knew Grandpa couldn't see well. However, as the trailer drove by, Grandpa grabbed the back of the trailer, stepped on, cane and all and rode to the shop where they would unload the wood. Yes, he was just that spry, even in his 90's.

Many shared of how Grandma and Grandpa were always together, "you never saw one without the other." Someone even shared that Grandma went to Men's breakfasts with Grandpa and then went out to breakfast with several other ladies. They shared how they taught Sunday School into their 80's and several former students and parents of former students shared. Grandpa was remember for how knowledgeable he was, his strength and ability to work with his hands. Someone shared how he carried 2 x 4's around the edge of the church building when it was being built. Grandpa was well-known for his story-telling and for his playfulness.

I remember my Uncle Roy talking with me and saying, "Grandpa has a doctor appointment next week. I don't suppose he'll make it!" That is the kind of humor Grandpa would have had, too. Though we laughed at how he blamed Uncle Roy for all the power tools that have gone missing from his house over the past few years. My Dad said Grandpa was playful to the very end. When the physical therapist would throw a ball to him, he would throw it off into the corner!

Walter and Mary Coats - at our wedding - July 1994

Especially emotional times during the sharing were when my Father talked about his Dad and my mother read my brother Steve's rememberances of Grandpa. The most powerful memory for me of Grandpa was how he always asked about Melody. Though had never met her and had a tendency to forget some things, he never forgot "the little one." His youngest Great-Grandchild somehow captured his heart. How I wish she could have sat on his lap just once. I believe that he remembered her often in his prayers.

I am so thankful that Grandpa now resides in heaven with Grandma. He is no longer in pain. He is rejoicing with the Lord. It is hard to imagine life without him. He has always been there in his little house in Emmett, ID. As I watched my Dad and his siblings I realized that no matter how old you are it is never easy to lose your Father. We are abundantly blessed by the heritage passed down to us by my Grandparents.

Melody and I outside Grandma and Grandpa's House

On our way home from the Memorial service we stopped by my Grandparents home. It was a bit surreal to walk into their home where little had changed. To feel like they should be there, but know they are not. To know I'll never return to the house looking that way again. To realize it is the end of an era. I was glad to be able to visit there one last time with Melody. Though she never met her Grandparents I was able to take a few special pictures.

Melody sitting in her Great-Grandpa's Chair - his when he was a little boy

Welcome to Grandma and Grandpa's

Sitting on Great-Grandpa's saddle - Made in Pueblo, CO in the 1920's

We love you Grandpa and Great-Grandpa. We miss you so much. Goodbye until we meet again.

A Life Well Lived

Saturday evening we received a phone call that my Grandfather, Walter Louis Coats, had passed away. He was 97 years old and had just moved into a care facility in the last month. Other than debilitating back pain, he was in good health. Then one day, he was gone. Faster than we expected, but we find ourselves thankful he is free from pain.

After 97 years of life, there really isn't much to complain about. Grandpa lived life well. He loved and served the Lord. He was a hard worker and this might be the first year he didn't put in a garden! If I'm gardening at 96, I'll consider that a monumental achievement.

I remember the twinkle in his eye he would get when telling a funny story or joking. He had fun little "toys," an accordian, or stuffed birds that made noise. Grandpa loved birds. What wonderful memories I have of visits to my Grandparents home in Emmett, Idaho.

I'm so thankful for a heritage of faith. It is an incredible blessing to have Godly grandparents who were faithful to each other and the Lord for so many years. I will be heading to Idaho this week to celebrate Grandpa's life. What a blessing to celebrate a life well lived. May the same be said of me someday.

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.

My Braceless Life

Melody & Mommy on the 4th of July

The last few weeks have flown by. We are enjoying our summer and Melody is loving life without her brace. She has always been a happy baby, but she is even more content and happy without the brace. In the last week she has even started sleeping through the night. That is a very welcomed change for me.

Enjoy the pictures of Melody without her brace!

4th of July!

Melody is learning to sit up without her brace. She is getting better everyday. She started out pretty wobbly as the brace used to give her support. As you can see, her legs still naturally stick out to the side like they did in the brace, however, we are working with them and noticing a lot of improvement already.

I like to play in the chair. I can lean forward now and grab toys. The brace used to hold me back. I work on my tummy strength while I'm playing.

Sweet Sisters! I can wear JEANS now and anything else I want to.

Melody, Hannah and Elizabeth

I can play in my super saucer now! I love it.

Hip Hip HOORAY!!!

Melody no longer needs her hip brace!!!! Her hip is in place. I can't tell you how exciting this is. I was shocked as this was not the news I was expecting. We were just sure that barring a miracle we would be deciding whether to try hip surgery or not.

I cried tears of joy as I drove home. Life with spina bifida means many disappointments and staying positive when you want to weep for your child and the challenges they face. But, some days you get to weep tears, not of sorrow, but of extreme joy. For, on days like today, God grants you a miracle.

I really like the Ortho doctor that we saw this morning. He added a whole day to his week to accomodate all the patients of the doctor who moved.

He spent a few minutes getting up to speed on Melody's hip and then sent us for x-rays of her hip. After returning from x-ray he examined her hip for a few moments and then said he needed to go look at her x-ray again. When he returned to the room he said she didn't need the brace anymore. That her hip is in the socket!

I'm so thankful we got to see him as early as we did. Melody's legs are already kind of stuck in the position the brace held them. The doctor said to keep them there when they no longer need to be would just make that problem worse. So, now we get to begin training her legs to go into a more "normal" position.

We will return to see the Ortho in 4 months. It is possible that Melody's hip will move out of the socket again. The Dr. said not to worry, it would not be something we do, but would be a result of the spina bifida. I was told to keep her brace as she will go back into it if needed. We will be praying that will not be necessary.

The Dr. also gave her the PT release as well as a referral for PT. I'll be following up with that as soon as her nurse case worker returns from vacation on Tuesday.

Melody was also given a RX for AFO's (ankle foot orthodics). She will need to be fitted for those soon as well.

I'm so excited. She can wear ANY type of clothing for a little bit until the AFO's dictate more of her wardrobe. We are already planning to buy her a pair of jeans and a float for the pool. Can't wait to put her in her supersaucer and change her car seat back. Diaper changes have become much easier and she is so much lighter. My back, neck and shoulders are grateful already. But the best part is cuddling her without the brace in the way.

What a wonderful day!

Counting Our Blessings, Again

Tomorrow I will take Melody to our much awaited visit with the Pediatric Orthopedic Doctor.

Tonight I was doing a bit of research on the internet to have my questions for tomorrow's visit. As always, doing research on spina bifida can be depressing.

Tonight I will count my blessings instead of my worries. Here I go:

1- We have the privilege of having Melody Annalise in our family. The alternative of not having her at all is too painful to contemplate. We are so thankful to have her, just the way she is.

2- Melody continues to be our miracle.

3- Melody has had NO urinary track infections, NO shunt malfunctions, NO emergency room visits, and NO constipation. These are all pretty amazing for our first year with SB.

4 - Our house sold quickly at a wonderful price and we have an amazing real estate agent :) who is helping us look for our new single story home.

5 - We have some amazing friends who are letting us enjoy their home, and more importantly their pool, while we look for our new house.

6- David, Elizabeth, Hannah and Joel, our other amazing kids who bring us joy each day and love on their baby sister like crazy. Watching them love on Melody is such a wonderful delight.

7- An abundance of friends and family who bless, encourage and love us.

8- Most of all God's love. What a wonderful priviledge to carry "everything to God in prayer." There is no greater place to lay my worries and fears about SB than at the feet of Jesus.

We're IN!

Melody has an appointment with the Pediatric Orthopedic Doctor this Friday at 9:30am!!!!!

Not exactly sure how I managed to get one, but I called again this morning and the receptionist was able to get us in. Maybe Melody's file was flagged "Mom is calling daily?" :) However it happened, I am just very thankful. Thank you God. We'll let you know how it goes.

Doctor News: The Good and the Bad

THE GOOD NEWS:
Hannah had a follow up with the ENT today and the good news is the infection in her neck is gone and the pocket of fluid is going away. We will return to the ENT again in 3 weeks, but if things continue this way, she should be fine. Pray that she will not get another infection in throat. We'd really like for her to be off of antibiotics for a good long time.

MORE GOOD NEWS:
Melody had her 9 month Spina Bifida Clinic yesterday. Her kidneys and bladder continue to look healthy and she continues to have no issues with her shunt. We got refills on the prescriptions she needs and plans to increase dosages at 1 year as she won't return to clinic until December.

THE NOT SO GOOD NEWS:
Yesterday we scheduled a babysitter so Kevin could come thinking this would be a monumental one. We had a whole list of questions for the orthopedic doctor as Melody has been in the Pavlik and now Rhino brace since Jan and we have yet to see the doctor personally. Last time we were there, he was not, but had given his notes to Melody's pediatrician. This gave us the information he wanted us to have, but did not allow for any questions to be answered. We soon found out he was not there, again, and more than that, he has taken another job and moved to another state!

We asked a bunch of questions of her spina bifida pediatrician and the rehabilitation specialist. They both said, you need to ask the doctor, we can't answer those questions. So, we left with the plan to schedule an appointment with the interim orthopedist. This was very disappointing as they can't run her physical therapy consult until he releases her for that. Also, they mentioned it looks like Melody will need AFO's (ankle and foot orthodics), but that is a decision the orthopedist will make.

Today Melody's awesome nurse/case worker called as she is trying to get Melody scheduled with the orthopedist. The first appointment is in OCTOBER!! They won't even schedule her appointment then as CCS (her insurance through the state) expires in Sept. We can't even get her on a waiting list to be called if there is a cancellation until they can actually schedule her an appointment in Oct., which they can't do until her CCS is extended. Needless to say, her caseworker is very frustrated.

She has submitted paperwork to get Melody's CCs extended, but that will take a few weeks. Then we can get her an appointment in Oct. and get on the waiting list for cancellations and hopefully get in earlier. I now have the doctors phone number and will call weekly to see if there is a cancellation and if they will try and fit her in. They're going to love me. :)

A new orthopedist for the spina bifida clinic arrives in September, so it is possible we will be able to see him before we could actully see the interim doctor. Melody's nurse/case worker is pursuing both options to try and get the earliest available.

From our perspective the brace is not resolving Melody's hip issues. Barring a miracle, she will probably need hip surgery, or she will live the rest of her life with her hip out of the socket. Of course, this has not been confirmed as we have not seen the doctor, but the little the ultrasound techs can tell us and from the reports, there has been no change in her hip. If Melody did not have spina bifida, she would likely be scheduled for hip surgery already. However, with spina bifida it is controversial as to whether the surgery will even help and we were told they take a more "patient" approach. If they don't think she'll walk anyway, they do nothing. God help the doctor that suggests that approach to me.

Doctor Visits

Tomorrow and Thursday we will be visiting the doctors. Wednesday Melody has Spina Bifida clinic. We will see the usual doctors (pediatrician, neurologist, urologist) as well as the Pediatric Orthopedic. As Melody is now 9 months old, they'll be doing a full assessment of her leg function and make physical therapy plans. We should also learn more about her hip and have lots of questions we hope to have answered as well.

Pray for this visit. I am anxious about it. I think I know Melody pretty well and her abilities as well as areas to work on. However, often the doctors reveal something new and it is sometimes hard to take. Kevin will be going with us to help process all we learn as well as ask questions.

Thursday is Hannah's follow up with the ENT. The redness is gone from her neck, so I know the infection is better. However, there is still a sizeable pocket of fluid where the cyst was. He had only discussed draining it if it grew, which it has not. She has 3 more days of antibiotics. So, we'll see what the doctor says then.

I'll try to post updates, but it may be a few days as life is busy until Friday.

Melody's First Swim

I finally got brave and took Melody in the pool with us the other day. Well, actually I warmed up the jacuzzi a bit so Melody and I wouldn't get too cold. I just left her brace on as that was what the orthodics man had said and it really did need a good washing. She loves the water. Here are some pictures and video of the first of sure to be many swims for Melody.

Cyst Saga Continues

Yesterday Hannah saw her doctor for a post-op appointment. He confirmed what I knew that her neck is infected. We have begun a round of antibiotics once again and will return on the 17th to see how it looks then. Continual antibiotic use is what we were trying to avoid!

Pretty much right after Hannah surgery I noticed a bump on one side of her neck. I assumed it was part of the neck swelling and would go down. But, the rest of her swelling went down and that bump stayed. Then, over the last few days it began to get larger and a couple of days ago began to turn a dark bruise looking color. She has had no fever or pain, though.

From Monday night to Tuesday night the size almost doubled. The doctor is still hopeful that the cyst has not returned. He thinks that since I noticed something almost from the beginning that it could be a hematoma or pocket of fluid that is not a cyst. Hannah has had a cold this past week, so that is probably where the infection came from. It is possible that if a cell was left during surgery the cyst could grow back.

We are praying antibiotics will resolve the issue. That would be awesome. Other options are draining the fluid if it gets bigger or repeat surgery. We are hoping to avoid both of these.

Hip Abduction Helpful Hints

Several months ago Melody's doctor prescribed the "pavlik harness" for Melody's unstable hip and we've since moved up to the "rhino cruiser." Having a child in a hip abduction brace is a challenging adventure. One of my biggest frustrations has been the lack of help given when we left the doctor. I have had to come home and figure things out. The internet has been the greatest source of help when a few Moms have shared their tips.



So, to add to the motherly advice in cyberspace, here is a list of tips I've complied:



1) The week your child is in a new brace will be difficult. There are the emotional adjustments as well as the practical ones, like figuring out a whole new wardrobe. Give yourself time to adjust.



2) Once you've adjusted, what seemed overwhelming will soon become routine.



3) No matter how routine dealing with the brace becomes, there will be difficult and emotional moments. It just isn't easy or "normal." Ever.



4) Baby Gear is another difficulty. Finding things that accomodate your child's legs sticking straight out is difficult. Here are some of the things we've found that work:

- Macleran Techno XLR - I love this stroller and it accomodates Melody's brace perfectly. I really can't say enough good things about this one.

- High Chair - Chicco - the only one we could find without sides. The arms go up and down, so I put her in and then lower the arms over her legs. It works very well.

- Car seats have been our nemisis. We are using the Eddie Bauer Deluxe 3-in-1. It accomodates Melody's legs and is rear facing as well as converts to forward facing and then a booster. Those are really the only good points I have found so far. It was less expensive than other options and was available immediately when we needed it, so that is what we have been using.



5) Leg warmers - they are easily obtained on ebay for $2-4/pair. The are wonderful with the Pavlik harness and I could change diapers without having to remove the harness.

6) The rhino cruiser makes Melody very hot so we've been dealing with heat rash and eczema. I've found a light pair of leg warmers and a onesie are about all she can comforably wear. I leave off her socks and shoes as it allows her to stay cooler.

I'm sure this is not the last post, but those are my tips for now.

12 Years Old

I'm a bit behind on this post. But, we are now the parents of a 12-year-old. Today David was promoted from 6th grade into Junior High and Youth Group. What a way to make a Mom teary-eyed and proud. When your kids are born it is hard to imagine the day they'll start Junior High, but then, before you know it that day is here and you know you've spent a lot of time preparing for them for that.

Last week was David's twelveth birthday. We celebrated the day with our traditional chocolate chip pancakes for breakfast and David chose Applebee's for dinner. The next day we had some friends over to go swimming, so it was a fun celebratory weekend. This week David and I will take our trip to Disneyland and the Downtown Disney Lego store. That will round out his birthday celebrations and take care of the haul of money he made from his relatives. We are both looking forward to it.

We are so proud of David. He has such a sensitive heart and love for the Lord. His understanding of the world is getting so mature and I love to have conversations about important things with him. He is so helpful around the house and with his siblings. He can make Melody giggle like no one else can. He plays Lego with Joel by the hour and generally has an abundance of patience with a four-year-olds "rules." He has taken up tennis this year and really enjoys it and is doing well. He runs with Kevin several times a week and with a little lead time, is now beating Kevin home. Elizabeth joins them sometimes and it is a joy to see brother and sister running together. Hannah always enlists David to come play games on her Webkins so she can earn lots of Kins Cash. He is the best at gaming around here.

We are so thankful for the 12 years we've been privileged to call David our son. What a wonderful gift.

Pigtails!

A picture is worth 1000 words, right? Are we blessed, or what!

Let the Sugar High Commence

Hannah was such a trooper for her surgery today. The nurses were all amazed at her calmness and she did great without eating all day. We arrived at the hospital about noon for her 3pm surgery. Of course, there was lots of waiting, but they wheeled her into surgery right on time. Kevin and I had to leave one they took her back, but she'd had a medication to calm her and she was pretty relaxed already. She doesn't remember anything after that until she woke up in recovery.

The dark spot on her neck is the cyst that was removed. In this picture it is the smallest it has been in months as 3 weeks of antibiotics helped it shrink. The cyst was larger under her skin than expected, but it was not infected, so that helped with it's removal. They took the cyst and the "tail" these types of cysts have with them. There is only a 5% chance it will return and it would return in the next 4-6 weeks if it is going to.

Here she is beginning to get prepped for surgery.

Gwen, Hannah's American Girl, went along for the day's excitement. Hannah chose a new American Girl activity book as her after surgery toy, so Gwen had to be there. Before I left the hospital Hannah said, "Gwen, it is time for you to start school."

Hannah is all changed into her hospital garb which she said has "clowns on it and makes me look like a clown."

Surgery was over in just about the hour and a quarter the doctor had predicted. When Kevin and I got up to recovery, we found an awake and very upset Hannah. She was in a lot of pain and was mad at the nurse. "SHE wouldn't let me drink the whole thing." She was very thirsty and didn't understand why she couldn't drink water more quickly. They got her pain managed very quickly and we spooned water into her mouth and calmed her down. The HS Musical 2 DVD probably did the best job of taking her mind off her woes.

At one point I almost fainted and had to sit down. That is not typical for me as I don't usually get squeamish. She has a large bandage on her neck and was irritated by the IV. By the time we left recovery and got up to her room (about 6pm) Hannah was doing much better. Ordering her dinner made her very happy. I stepped out to make a couple phone calls and returned to see Hannah eating her "appetizer."

Hannah's "appetizer, chocolate pudding.

After a day of eating Hannah's eyes lit up at the mention of a toasted cheese sandwich. It proved to be too harsh for her throat, still. But, by 9pm she had managed to also eat 3 orange sherberts and drink an orange soda and had the apple juice and chocolate milk waiting. So, as long as she doesn't give herself diabetes, she should be fine.

Hannah should be discharged in the morning. The cyst was draining quite a bit, so if it is still draining in the morning, it might be a bit later before she is released to come home. Kevin is spending the night with her as I need to be home to feed Melody.

We are especially grateful that Carla came to spend the day with the rest of our family. They had a wonderful time and Carla was a real trooper and took care of all Melody's needs. Rob joined her part of the time and I heard there was swimming and eating out as part of the day, so they were very spoiled. I didn't make it back home until about 8:15pm.

While I was telling Carla about Hannah's surgery, Elizabeth asked me not to talk about it and then went to sit down. She proceeded to pass out and then wonder why I was standing over her all worried when she came to. This is the second time she has passes out when medical things are going on. Guess none of our daughters will be nurses. :)

Surgery Update

Hannah's surgery will be at 3:oopm. She is the oldest patient tomorrow! So, pray for her as she goes the whole day without eating. She can have clear liquids until 10am. We need to arrive at the hospital at noon.

Hannah's Turn

Sisters! Hannah & Melody

Wednesday, May 19th, Hannah will be having surgery at Loma Linda University Children's Hospital to remove what is believed to be a thyroglossal cyst from her neck. If it is that type of cyst she will be there overnight. If it happens to be just a regular cyst or a lymph node, she should be able to be to come home that day.

This is the cyst we first discovered when it got infected about the time Melody was born. Over the past couple months it has continued to get infected. She has been on antibiotics for the last 3 weeks. It will likely continue to cause problems unless it is removed, so that is why we are having this surgery.

We are looking forward to spending the morning at Disneyland tomorrow before Hannah's surgery. I will be able to call between 1-3pm tomorrow and find out what time surgery will be. They schedule surgeries based on age, so we expect hers to one of the first of the day.

Carla is going to come to be with the other kids so both Kevin and I can be there for the surgery. It will be a crazy day for me as I go between the hospital and our house to care for Melody's needs. Kevin will be able to remain with Hannah and spend the night with her if necessary.

So far Hannah is doing great with her impending surgery. She has a box of popsicles waiting in the freezer and a couple of gifts to open when she wakes up. Doctor Rowe has answered all her questions and assured her she'll be asleep for most everything, even the IV.

Thanks for all your prayers. We know this is a simple surgery, but we also know that all surgeries carry risks. I'll try to update this after her surgery.