Count It All Joy

Limited Energy

2012-02-02T20:44:00.000-06:00

Driving home tonight to switch places with Adam and spend some time with my big boys I started thinking about how much energy I waste trying to hold off things I have no control over. I realized how tense I had become in the last 24 hours, willing Asher to eat more, wake up longer, get home sooner, when there is really absolutely nothing I can do about it. There are moments when I relax into the present, where I think gratefully of this bit of quiet time I get to spend with my youngest before he is thrust into family life and things get a lot busier. But for 90% of the time I am pushing a mountain hoping to move it a few inches or trying to redirect the waves of the ocean using only my two hands.

It's ridiculous, really. I only have so much energy in my body and much of it is being taken up by lack of sleep and a 3 hour feeding schedule. Why in the world would I want to use the rest of it on something so fruitless and how often do I do this with everything else in my life without even thinking about it? What would happen if I allowed myself to take things as they came without fighting tooth and nail every inch of the way? The Serenity Prayer comes to mind. What I wouldn't give to have that wisdom to clearly know the difference between what I can and can't do anything about.

Asher's Short Birth Story

2012-02-01T09:39:00.000-06:00

A little later, when we are all home and settled, I will come back to share Asher's full story. Until then, here are the fun basics.

Asher Riley was born peacefully, quickly and a little early at home on Sunday, January 22 at 8:11 am. He was so quick, in fact, my midwives almost didn't make it. When he was born he had trouble breathing and wasn't as quick to pink up. The midwife did mouth to mouth and he began to breathe but wasn't crying or engaging. They decided to call an ambulance to transport him to the local hospital. As we waited for the ambulance to arrive Asher began to stabilize but still wasn't quite as stable as we would like, so Asher and I were transported together.

At the hospital we learned that Asher weighed in at 10 lbs 2 oz. We also learned that he was suspected to have Down syndrome. They took some blood and ordered a chromosomal study, we would find out the results in 72 hours. They also found he had an elevated white blood cell count and needed oxygen. They wanted to put him on a 48 hour antibiotic. We asked them to transport him to Children's Hospital. We had already decided if he needed to be in the hospital for longer than a day we wanted him at Children's.

He has been there ever since. And he does, indeed, have Down syndrome, the 'fluke' kind, the doctor tells us.

We have lots of hope that someday soon he'll be headed home.

Not So Academic Philosophy

2012-01-21T10:08:00.000-06:00

We had big news in our house yesterday. I mean BIG news.

Since birth, we were just positive that Caedmon was completely paralyzed below both his knees. He has never wiggled his toes, never pointed his feet, never shaken his feet, never had movement at all. It made reading stories about baby toes and watching other, 'regular' babies playing with their feet rather painful. I got pretty adept at avoiding any library books that mentioned feet.

Everyday we stretch Caedmon's feet. It takes about a half an hour and a good video to distract a very active three year old. Sometimes, during his stretches, I noticed that the muscles in his left foot would jump a bit, like he was working them somehow, but I shrugged it off figuring it was just a spasm of some kind.

Yesterday, Adam took off his braces to give his feet a break and was lotioning them, another important thing we do everyday. All of a sudden, Caedmon started to move his left foot up and down! Adam couldn't believe it. "Do it again, Caedmon!" he said. So, Caedmon looked down at his foot and did it again.

Later on in the morning, I was doing his stretches. "Caedmon, can you move your foot like you did for Daddy?" I asked. He looked at it again, like he was really concentrating, and there it was, the foot moving back and forth!

It was awesome!

We had been warned that he may have good days and bad days. Days when his nerves are more connected, work better and he'll be able to do more, and days when things just don't seem to click. We are fully aware of this.

However, when you have a child who struggles with anything, school work, fears, nightmares, psychological disabilities, physical disabilities, you pray constantly that they would find a way through. You pray that their minds or their bodies would start to operate as God originally designed them to. You pray that they would be able to take this difficulty and turn it into some awesome strength that would not only change their world but the world all around them.

So, Caedmon moved his foot. This, to me, is a miracle. For three years he has not had any movement and now there is movement. For three years I have been putting him to bed every night with the prayer that God would please bless his body and help it to work in the best way possible. That He would touch my son and help his body to work as God planned it to work when He first thought of Caedmon.

My problem with this is, of course, the hundreds of others with spina bifida who I have met since this journey began three years ago. Some of them are much better off than Caedmon. They walk without issues, they are able to use the bathroom, they appear as 'regular' kids. Some of them are much worse off than Caedmon. They are lying in the hospital as I type this fighting for their lives with parents in so much pain, not able to do anything but pray and hope their child will get to come home. How do I tell this latter group that God answered my prayer for my son but not their prayer for theirs? Even if it's just a partial answer, what about those who seem not to get an answer or get a negative answer?

I have no easy answer to this. I am not a great philosopher. I struggle almost daily with the questions this issue brings up. I am skiddish of those who say they have it all figured out because it is so huge and so complex and, just when you think you have the answers, you meet another person who doesn't fit into the solution and have to start again.

So, not answering any of the questions I find so difficult, I have come to see that my philosophy of parenting a child with special needs is that I believe in a God of love. I believe that my son was not created to be disabled but, because of this world of sin and pain that we live in, he was born with a disability. I believe that God's ultimate purpose for us on this earth is to make us holy so that He gets to spend an eternity pouring out His love on us. That means that His goal for me and my children and everyone is not to make us HAPPY but to make us HOLY. That means that He gently guides us and teaches us and sometimes He leads us through some pretty tough crap to ultimately bring us to Himself. I believe that God looks at Caedmon, and every other person in this world, and sees all the potential wrapped up in his amazing body and mind. I believe that God whispers to Caedmon everyday, 'ALL things work together for good, for those who love Me and are called according to My purpose. I have called you, Caedmon. I love you!' I believe that Caedmon will have a full and fullfilling life, not because of what his body can't do but because of what he can do when he sees his own potential. I believe Caedmon will reach many people because he responds to the call. I believe that there will be a day when my son's body will be made perfectly whole and I will see him running and jumping and flying. And I believe that the most important thing about that moment will be knowing he gets to be that way not just for a few short years on this earth but forever.

So, Caedmon moved his foot. That's pretty darn awesome. More awesome than that is every time he sings his own little song about the love of God, and every time he looks at me and goes on to do something I didn't even know he could. He's going to go far, that little guy.

Damek's First Christmas Program

2011-12-11T21:58:00.000-06:00

Damek played a wiseman in his first play. He had a small speaking part and singing part. Unfortunately, he was in the first skit and the cameraman was unsure of how to focus, so he ended up blurry. Thankfully, we will have more opportunities to get it right. :-) Enjoy!

Changes On The Horizon

2011-10-31T13:00:00.000-05:00

I'm learning this fact about myself, that when life starts picking up my blogging falls to the wayside. It's been a long while since my last post and here is why:

An update on our latest baby boy, we are in a holding pattern both as we wait for the due date and as we anticipate an ultrasound in mid-December to look for any changes.

We have not had much time to dwell on this news, however, because soon after learning of baby's possibilities we were informed that Adam would be moving to a new church by the end of the year. You can imagine that finishing up work at two churches, house hunting, packing, continuing with school and therapies for the boys and being six months pregnant are keeping us on our toes while wishing we were lying in bed. :-)

Tomorrow we head out to try our hand at house hunting. Rental prices being as high as they are right now, we are considering purchasing. We are praying to find something in our price range that will be clean and livable and near the church. In our 13 years of marriage this will be our 11th move. And in those 11 moves God has always provided just the right place for our family. We cling to His faithfulness and know He has something, somewhere for this little growing family.

So, we look forward to what is ahead. All the changes can seem a bit overwhelming when we look at them altogether but God is able and capable and we keep trusting that He's leading us where He wants us to be.

When Life Just Doesn't Make Sense.

2011-09-23T09:34:00.000-05:00

This song kept going through my mind last night as I wrestled with surrender, what it means, what it looks like. There is more to come, when I am not chasing a 2 year old around, but for now, the song:
Blessings

New Baby Joys And Woes

2011-09-22T15:16:00.000-05:00

Baby and I had our 20 week ultrasound this morning. My midwife sent me to a perinatologist whom she works closely with. They have a wonderful, respectful professional relationship and it was a joy to be treated with the same respect.

The perinatologist spent over an hour going over every little bit of the baby, measuring and checking everything that could be measured and checked.

The positive results: 99.9% sure there is no spina bifida. The spine looks wonderful, head and brain are just what they should be, legs and feet straight and strong. The heart is doing well, measures just as it should and all the parts are pumping.

The negative results: there are two possible indicators of a chromosomal abnormality. The more serious of the two being that there is a high amount of fluid in both kidneys. This indicates either a blockage in the system somewhere or reflux, where the fluid is coming out but some of it is going back up again. This problem cannot be dealt with at all in utero and is something that we would deal with as we meet with the pediatrician after birth.

As we were leaving, the doctor reiterated to us that we have a very healthy baby and there is a 98% chance that we are going to have a perfectly normal, healthy child. But, now we are aware that there is a possibility of something more when the baby comes.

We ask for prayer for us as we process what this all means and for the baby. We know from prior experience that God will give us whatever we need for whatever we will face but it would be so wonderful not to have to face anything out of the ordinary. I guess we just ask for prayer that we would be prepared for whatever is to come and that God's healing hand would be on this little one.

And, in case your curious, it's another boy. :-)

Another Milestone Today

2011-09-01T20:27:00.000-05:00

The pictures of Damek's first day of school and video of Caedmon walking are still coming, I promise, but I just had to share that today Caedmon walked backwards, completely unassisted, for the first time today! He did it first in the water at aquatherapy but a few hours later, when Adam took him to pick Damek up from school, he said, 'Watch this!' and proceeded to turn around and walk backwards for six steps. It was actually more of a backward dance, our little crazy son. I wish we had video to show you.

Summer 2011

2011-08-21T18:46:00.000-05:00

I have been a terrible poster these last few months! The reason being that we learned in early June we were expecting our newest addition to the family. I have had terrible 'morning' sickness (actually, evening sickness) for the past three months but am now on my feet again.

Since my firstborn's first day of school is tomorrow, I am operating under the pretense that summer is now drawing to a close. Here are some of our memories of this very busy summer:

Caedmon began the summer by standing up from the floor! He continued to amaze us as he began walking with no assistance and has grown stronger and stronger throughout the summer.

Damek is a whirlwind and such a joyous boy.

Our neighbor pointed out this dragonfly tree. We'd never seen so many dragonflies sitting still in one spot before.

After spending a week in Hutchinson for campmeeting we came home long enough to do some laundry and then were off for Oklahoma to witness our friend's retirement from the Air Force and his son's baptism.

No summer is complete without swimming lessons but this summer we learned we should have paid Grandma the $50. She did a lot better teaching Damek to get his face in the water in two days then his teacher did in two weeks.

Cousins on the top of Pikes Peak.

Cousins!

Somehow these got out of order, but more Pikes Peak.

Damek learning a few pointers from his cousin on how to cross those bars.

So fun! Uncle Wilber's Fountain, plays music with coordinated spouting water.

The Tuba Man, hidden inside until the music starts.

Gymnast Cousin.

Damek's 6th birthday, celebrated with lots of family in Colorado.

Cousins are so helpful at parties.

They help you eat cake and ice cream, very nice.

It was so awesome to have so many people we love in one place!

Grammie and Pop Pop!

Caedmon loves babies and cousins!

A trip to the zoo was very exciting!

The family and Grandma!

My Sky Riding pal.

The family and Grandpa!

We even got to throw a birthday part for Booga!

Again, the order is totally out of whack but Caedmon was so excited to be this close to a train, until the whistle blew!

So, there's a bit of our summer. Coming soon, school pictures and video of Caedmon walking!

Beatboxing Fun

2011-07-11T09:53:00.000-05:00

Damek has been into beatboxing for a while now. He told me a few months back that his spiritual gift was 'making music with his mouth' (beatboxing). He has passed his love onto his brother, who really enjoys the spitting part. At church on Sabbath Caedmon decided to show off his new talents. Our friend recorded some of it and, using an iPhone app, actually made it rhythmic.

Walking Free

2011-06-20T13:07:00.000-05:00

We've just returned from a week away at our denomination's campmeeting.

Adam taught in the Kindergarten division and had a great time with Damek and all the other 4-6 year olds who came out for the week. In the mornings I took Caedmon to his class, in the afternoons I taught a session on prayer. It was a beautiful experience meeting so many others on their own prayer journeys.

Our kids continue to grow and change and develop in awesome ways. Sometimes getting away from the routine of home helps me see it better. Damek is becoming a great helper, very eager to be of assistance where needed. God has given him a lot of desire to be a leader and he continues to grow in that area. Caedmon is a doer. He gets something in his head that he wants to try and then he just does it. We stayed in a hotel for the past week and Caedmon decided one afternoon that he would like to walk across the lobby, a couch to a chair about 10 feet apart, while we waited for Adam to finish up some business. He started with just a few steps, then he would crawl back to the couch, stand up and try again. Adam finished his business and we needed to get somewhere but we just couldn't stop watching him. He kept trying, again and again, until he got to within a foot of the chair. We couldn't believe it!

We are so thankful for our boys. They teach us so much every day!

New Seasons, New Skills

2011-06-01T20:34:00.000-05:00

Caedmon is again wowing us with his mad skills. (And Daddy too, who showed us how to use the handyman's secret weapon to fix up Damek's old tricycle so Caedmon can ride it. Hint: look for bright green in the video.)

Original Blog Post: January 12, 2009- More Prayers

2011-05-26T20:00:00.000-05:00

As I type this Adam and Caedmon are sitting at the Children's Hospital Emergency Room. This evening, after a day of appointments with various doctors all saying how wonderful he's doing, his scalp incision began to puss. We immediately called the doctor who said to meet him at the emergency room. We had been very careful over the last few weeks to keep him off of the incision side unless he was being held in our arms and we could ensure that no pressure was being placed on the incision area. However, today, after meeting with the Nurse Practitioner for the neurosurgeon who said we could treat it as a normal head and place him on his back or either side, we put Caedmon on his back in his carseat and on his back in his swing. It was after this that we noticed the fluid. We are calling out for God's mercy. If the medical staff feels there is an infection in the shunt or if they can see the shunt because the incision has opened up Caedmon will be looking at replacement shunt surgery and at least a month in the hospital. We need a lot of prayers.

Lamentations 3
17 I have been deprived of peace;
       I have forgotten what prosperity is.
18 So I say, "My splendor is gone
       and all that I had hoped from the LORD."
19 I remember my affliction and my wandering,
       the bitterness and the gall.
20 I well remember them,
       and my soul is downcast within me.
21 Yet this I call to mind
       and therefore I have hope:
22 Because of the LORD's great love we are not consumed,
       for his compassions never fail.
23 They are new every morning;
       great is your faithfulness.
24 I say to myself, "The LORD is my portion;
       therefore I will wait for him."
25 The LORD is good to those whose hope is in him,
       to the one who seeks him;
26 it is good to wait quietly
       for the salvation of the LORD.
27 It is good for a man to bear the yoke
       while he is young.
28 Let him sit alone in silence,
       for the LORD has laid it on him.
29 Let him bury his face in the dust—
       there may yet be hope.
30 Let him offer his cheek to one who would strike him,
       and let him be filled with disgrace.
31 For men are not cast off
       by the Lord forever.
32 Though he brings grief, he will show compassion,
       so great is his unfailing love.
33 For he does not willingly bring affliction
       or grief to the children of men.

Early Spring Happenings

2011-05-12T14:18:00.000-05:00

I haven't posted any pictures for a while, so thought I'd just make a picture-y blog. Here's how our spring has gone so far.

Taking a walk in the spring with a cast can be dangerous. Keep plastic bags handy.

Wo oo Wo, listen to the music

Lovin' some story time

Beautiful sunset just before the May snow.

Two teeth down, twenty some to go

New hair cut and a weird facial expression

Going along with Mommy's weird expression

Adorable, love this boy!

New Place, Same Family

2011-05-04T20:59:00.001-05:00

Welcome to our family's new blog location. The same people you know and love, better location.

Original Blog Post: May 1, 2011- Moving In The Right Direction

2011-05-04T20:58:00.001-05:00

You, as the smart person that you are, may have been thinking as you read my last post, 'But it's only been three days. Give it some time, Mama!' And maybe this is the lesson to be learned, that moms and dads so quickly lose hope and confidence while junior is doing just fine and just needs to find his feet again. Anyhow, I am here to tell you that you were right, I need to relax.

Caedmon jumped right in to his aquatherapy. He stood for about 15 minutes playing with the toys on the edge of the pool. He took the two short floaty-stick things and walked the length of the pool and back. He stood and sat about 10 times, totally unprompted, just decided he needed to do that particular exercise.

Immediately following therapy I noticed changes. He was crawling more, trying to climb up in his chair and into his bed. He is a little clumsy and will have to strengthen those muscles again but the point is that he's trying!
Yesterday I took the boys to the zoo and he pushed his own stroller for about 20 minutes. He stood at the edge of a petting pool (you can touch little sharks and rays) and splashed water for another 15 minutes before he was finally ready to sit and rest.

I'd say that's pretty good progress!

Wednesday he gets fitted for twisters, straps that wrap around his legs to hold his feet in the correct position. I think once those are one he will really take off. His left foot is beautiful now, pointing in almost the right way. His right foot is now the problem and trips him up quite a bit when he's trying to walk.
I am so excited to see how far he has come so shortly. It's incredible being on this journey with him!

Original Blog Post: April 26, 2011- Baby Steps

2011-05-04T20:56:00.001-05:00

Caedmon has been sans cast for three days now. On Friday his new AFOs were finished and he had his final fitting. With the support those give his newly surgeried foot/ankle, we were able to take off the cast. Tomorrow will be his first bath, so looking forward to that!

It has been difficult watching him these last few days. He continues to scoot around on his bottom and does not want to crawl at all. He doesn't believe he can get down from his dining chair, or any chair, on his own. He won't even try to climb into a chair. He is terrified of the stairs, will not kneel next to the couch and cries if we try to help him stand or walk. All things he could do brilliantly just a few short months ago.

I know it is a matter of time and patience, I am trying to let go of Pushy Mommy and allow him to go at his own pace. His PT told me today that the fact that he was so strong and able to do so much before the surgery will mean he will bounce back fairly quickly. It is still really difficult. It is really hard to see how far backwards we have gone. It's hard to see him as scared to take risks when he has never flinched at trying anything before. I hate to see how his confidence has been sucked out of him. I got a little teary during our appointment today. He was so cautious and shy, not my bubbly go-getter at all.
My hope is that when he gets back in the water again on Thursday for aquatherapy he will start to remember all the wonderful things he's been able to do. He will start to regain the confidence to stand and walk and explore. I know this phase will pass, I know he will go beyond what he ever has before, but I also see how easily it can be to lose gains and what an uphill climb it will be for him to keep pushing and not give up.

So for now we take baby steps: encouraging crawling using verbal cues, helping him get back into the habit of tall kneeling while playing at the couch, maybe in a couple of days he'll try to climb the stairs, and maybe next week he'll try to stand, and a few days later he'll try to take a few steps.
Life is all about patience and adaptability.

Original Blog Post: April 20, 2011- The Whole Patience Thing

2011-05-04T20:55:00.001-05:00

After much anticipation and excitement, Caedmon's cast was removed today. It's been about 7 weeks, it's felt like a really long time. I was looking forward to seeing him stand again, and anxious to see if he was able to walk a bit. I think just being able to bend his knee will be a really wonderful sensation.
His cast was also put back on today. I had not anticipated this. Apparently the doctor communicated some things to my husband over the phone that didn't get passed on to me, ah, well.

So, the cast.

It's the same cast he's been wearing the last two weeks, cut in half and put back on bound by athletic wrap. The purpose is to protect the holes after the pins were removed. They need about a week to scab over before he will be allowed to take a bath and start aqua therapy again. So, one more week of sponge baths, scootching and stationary activities.

Original Blog Post: April 19, 2011- Other Blogs

2011-05-04T20:53:00.001-05:00

This is for the benefit of my parents and family and friends who might want to know what else I have been up to (I'm using my time more wisely than that report card in 2nd grade, Mom and Dad ).

I'm writing a monthly devotional blog for Signpost Ministries, a ministry set up to support families of and people with disabilities. Here's my latest contribution: http://www.facebook.com/#!/pages/Signposts-Ministries/147970165231299?sk=info

I also wrote a blog on prayer for one of the magazines our denomination puts out. You can find it here: http://www.atoday.com/contagious-spirit-corporate-prayer

Original Blog Post: April 8, 2011- How To Break A Cast In Seven Days

2011-05-04T20:52:00.001-05:00

Yes, it took a mere 7 days for Caedmon to wear down the heel of his cast and require a new one. He's been very good with just scooting around but it's impossible not to drag that heel while he's doing it. He still has 2 weeks left with the cast so we had some concern that he would be doing this a few more times before we finally get to take it off for good. They put extra support on the heel so hopefully that will take care of the problem and we will finish strong.

Original Blog Post: March 31, 2011- The Difficulty Of Saying 'No'

2011-05-04T20:50:00.001-05:00

I realized yesterday why I struggle with Caedmon being in a cast so much.
We had gone to a park, one we hadn't been to in a while and I didn't remember much of the set-up. When we got there, I realized there was nothing Caedmon could do, except swing. Thankfully, he loves to swing. The only way to get to the slides was up two awkward ladder-like things or through a long tunnel.
I had never paid any attention to accessability before having Caedmon. Never considered how difficult it would be for some children to get around.

On this day, swinging was not enough. He wanted to slide. He wanted to go in the tunnel. He wanted really bad to scoop (those excavator things). The scoop with handles that happened to be at a height for a standing child and didn't work well while sitting in a stroller.

For the first time since his birth, I had to tell him no. No, you can't slide. No, you can't go in the tunnel. No, you can't play in the sand.

That's when it hit me.

I had determined since pregnancy that I would say 'yes' to anything Caedmon wanted to do. We would figure out together how to do it, if need be, but he would never hear the words, 'No, you can't' come out of my mouth. And here I was, breaking my own vow.

It was so hard!

I tried to make a positive spin on it by saying, 'When your cast comes off you can do that!' But it sounded so lame. I just keep hoping that he will have little to no remembrance of this time and he will not be set back when the cast does come off. He doesn't seem phased a bit by any of this. I'm so grateful for his positive attitude toward everything. So many times he ends up cheering me and encouraging me.

What an amazing and wise, laughing warrior we have.

Original Blog Post: March 29, 2011- Three More Weeks

2011-05-04T20:49:00.001-05:00

It's always good news to hear the doctor say, 'Everything looks great! Keep doing what your doing!'

It's not so great news to hear the doctor say, 'I'll see you in three more weeks and, if everything looks good, we'll remove the pins and take the cast off.'
It's a little miserable to have him put a new full-leg cast on your two year old and be sent home when 'keeping doing what you're doing' means no crawling, walking or standing.

So we wait. Three. more. weeks.

Original Blog Post: March 23, 2011- Early Spring

2011-05-04T20:47:00.001-05:00

I've been wanting to write this post for a while now and finally got around to it today. Ironically, as I write this it is snowing and blowing outside. We're forecasted to get another seven inches. What a winter!

A week ago we had wonderfully warm temps, the snow was disappearing and we went for a walk every afternoon. One day we got all the way up into the 50's! We had to go to the park, it was that kind of day.

When we drove into the park we couldn't see the normally very visible playground because there were two mountain ranges worth of snow hiding it. We were not daunted. Caedmon had been begging for months to go swinging, what was a little snow?

When I pulled into the parking lot, between the mountain ranges, there was no parking space available and all that could be seen of the spaces were the ends of the lines trailing off into snow banks. There were also no cars there. I figured, why not parellel park since we have the place to ourselves?

We pulled out Damek's scooter, hoping there might be some kind of sidewalk visible.

And headed for the playground. I had to push (hard) through quite a few feet of slushy, wet snow. I wasn't sure if we would make it or not. Damek found some space to scooter but not much. Here's the view of the playground once we finally got there:

We were the only people there but Caedmon had an awesome time swinging, Damek slid down slides that 'aren't wet, Mom!' and I could not have been happier, with feet soaking wet in snow (I wore clogs, wouldn't you know) and a brilliantly warm sun soaking into my face and hair. Caedmon and I watched a bald eagle soaring high overhead as he swung. It was lovely.

That same day, Damek, in a shocked and amazed way, showed us that his first tooth was loose! We wondered a bit how this would go because Damek is a very passionate soul and does not like pain one bit. But he wiggled on that tooth faithfully and just a few days ago our son became gappy for the first time!

What a nice spring. Now if only the snow would leave for good!

Original Blog Post: March 15, 2011- Recovering

2011-05-04T20:46:00.001-05:00

Caedmon is doing well in recovery. In fact, I've noticed that everytime I'm nervous about something, some development or something he's supposed to do and I think this is never going to happen, Caedmon comes out with it the same day. On our first full day home from the hospital Caedmon figured out that if he stuck a towel or blanket under his cast he could quickly scoot across the hardwood floors. This is awesome for two reasons: it's how he is supposed to be getting around and it elevates his foot, keeping his heel off the ground, which is also what we were instructed to do. What a little rockstar!

Original Blog Post: March 12, 2011- Homeward

2011-05-04T20:45:00.001-05:00

Caedmon and I arrived home exhausted but relatively unscathed from our hospital stay. Thankfully we received our own room though the hospital we stayed at has pods, two rooms together in a larger space sharing a bathroom. Our next door neighbor had a much tougher night and it is hard to sleep when you can hear someone crying, I've discovered.

Caedmon, we have learned, has basically no feeling at all in his foot. His surgery was major, six pins placed to hold his bones in alignment, two of them are actually protruding from the bottom of his foot, with a large cast over it to protect and cushion his ankle/foot as it heals. He has had one dose of Tylenol since the surgery and this was only because his temperature started to rise a bit. The nurse recommended Tylenol because a rise in temp can indicate pain even if he wasn't showing any signs of it.

FYI: I learned today that ibuprofen can inhibit bone development and growth so we are to give Caedmon no ibuprofen over the next eight weeks unless okayed by the doc.

On the amusing side of life, Caedmon felt like the hospital was his private social site. Every time anyone came in the room throughout the night he would immediately sit up and start talking to them. It happened first with the cleaning lady at 8 and stretched on from there.

At 11, he informed the new shift nurse that he was sleeping and Mommy was sleeping on her bed, 'I sleep, Mommy sleep her bed, I sleep'.

At 12, he introduced his baby and his blankies to the new shift nurse.

At 12:30, after his antibiotic round was finished, he let the nurse know the beeping was loud, he had a guitar and Mommy was sleeping.

At 1:00, when the flush was finished, he asked to see the vacuum (we had taken a walk before bedtime and stood watching the custodian for a loooooonnnnggg time).

At 4:00, he told the nurse he was still here, 'I still here'.

At 7:15, some young doctor, a little groggy as to who, came in, flipped on the light, marched right over to Caedmon and startled him awake. Good morning world! Caedmon was not nearly so cute and talkative in this scenario and Mommy was not nearly so kind, though I honestly tried.

So, we are home, with orders to keep him from crawling or standing for the next two weeks. This should be a very exciting two weeks. They suggested we tell him to scooch on his bottom if he wants to get somewhere . . . um, yeah. Lord, help us over the next two weeks!

Orginal Blog Post: March 11, 2011- Out And Recovering

2011-05-04T20:43:00.001-05:00

The surgery lasted a little over 90 minutes. He is out and doing well. He had a 'spicy' popsicle that he loved and is his normal, gregarious self. Thank you so much for the prayers!

Original Blog Post: March 10, 2011- On Being A Mama

2011-05-04T20:42:00.001-05:00

Tomorrow morning I send my son off to the operating room, wheeled out by a stranger's hands, taken to a place I've never been, cared for by people I've never met.

Tomorrow morning my heart will feel like it is gone from my chest, from the moment they take him away until the moment I get to be near him.
Tomorrow morning a surgeon will cut my son; in order to help him he will have to hurt him.

Tomorrow morning my stomach will be in knots, I will have a hard time focusing, my mind will be in constant prayer, tears will be poised on the brink of falling.

Tomorrow morning I will have to face again what all Mamas face at some point in their lives, though I always wished it would be a little longer until I had to face it: the letting go. The realization that this child, as much as they hold your heart, is not you. They must go. They must have experiences apart from you. They must be hurt in this life and, God-willing, they must grow stronger because of it. I must allow him to be placed in God's hands and watch him leave my sight: so vulnerable, so small, so beautiful, so loved.

Tomorrow morning will be hard.

Original Blog Post: March 9, 2011- Here We Go Again

2011-05-04T20:40:00.001-05:00

Caedmon's surgery is scheduled for 7:30 Friday morning. After all the times he has been the one scheduled late in the afternoon or been the emergency one fit in whenever the surgeon can get to him, I have a deep appreciation for being the first one in, especially when it means no eating or drinking before.

He had his pre-op appointment today with his pediatrician. He gets so excited when I tell him we're going to see anybody. With his medical history, that is quite a lengthy list. Take the pediatrician: he's seen the man maybe three times in the last eight months, would have no idea who he was if we saw him at the grocery store, yet he starts yelling enthusiastically as I'm getting him dressed this morning, 'See Dr. Brook! See Dr. Brook!' All the way to the clinic he's saying this, all during check-in, all during the nurse's pre-work. He had a great time giggling and playing during the exam and even smiled for the nurse pricking his finger and squeezing every last drop of blood out of it and just said, 'I saw Dr. Brook!' What a loveable nut! He's also thrilled that he gets to see Dr. Sand (the orthopedist) on Friday. I'm hoping he does not fear the sight of him after Friday.

For our praying friends and family, we're asking for prayers during the surgery, specifically, there is a chance that Caedmon could need a blood transfusion if things do not go well, we are praying this is not needed. After surgery Caedmon will need to have his leg elevated for a while and will be admitted to the hospital for 1-2 days. We are praying it is only 1 and that his leg shows wonderful signs of healing. Ultimately, we pray that this surgery will be more successful then anyone anticipates and goes a long way to bringing flexibility to his foot and alignment to his ankle bones.

Thank you so much for your continued support and care of our little warrior!

Original Blog Post: March 3, 2011- The God Of Hope

2011-05-04T20:38:00.001-05:00

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13

I am thankful for the God of hope, Who sends me visions of the greater picture when my mind is so focused on tiny detail, Who sees when I am caught in a riptide of hopelessness and sends me a lifeline to cling to, Who gives me a hug when I forget how much I need them, Who helps me to laugh at myself and see the humor in my darkest mood. What a kind, good God!

Growing up we rarely, if ever, went to a doctor. Unless there was a sign of something broken or a tumor, you suffered through it and went on with life. So, in my mind, doctor=certain death, or something like that. Having a child who needs major medical attention several times a year scheduled and more unscheduled is a big, big area of growth for this anti-medical (and tiny bit of a worry-wart) mama.

Thankfully, I have a husband who is very familiar with the inside of a doctor's clinic and special needs are not a foreign concept. The other night he said to me, 'We knew Caedmon would need more work on his feet as he grew. This is what will make him stronger later.'

Light bulb.

A little later that same day I received an e-mail from Caedmon's aquatherapist. 'Don't forget that this surgery will make him stronger. With his bones aligned he'll be able to do more and go farther.'

Light bulb.

Okay, God, I think I'm getting it.

Today, folding laundry, I realized that my stomach muscles were in huge knots. I stopped and prayed, 'God, please take care of Caedmon.'

Big wave of Peace.

Sigh. Light bulb.

I think I still have a long way to go to overflowing, but I'm sure thankful for the promise!

Original Blog Post: February 28, 2011- Surgery, Ugh

2011-05-04T20:36:00.001-05:00

Caedmon's ankle is getting worse. The top of his foot is blue and black and purpley, his ankle is swollen, the bottom of his foot is swollen. The orthopedist was able to get us in a few days earlier then scheduled because it looks so bad.

His left foot has always been a bit worse then his right, more turned in and more rigid. We found out today that the tendon release surgery he had almost two years ago did not do the trick. His bones are not aligning as they should. This means that he will continue to have injuries unless we do something surgically about it.

So, March 11 we will go in for that surgery. They will do a second tendon release plus put in some temporary pins to hold his bones in the correct place. He will be in traction almost the whole day following the surgery. We have been told to anticipate several days in the hospital.

We're asking for prayers and any great ideas you may have on entertaining a two year old in traction.

Original Blog Post: February 24, 2011- Caedmon Is WALKING!

2011-05-04T20:34:00.001-05:00

The last few days Caedmon made up his own game. He stands up next to a kitchen chair, lets go of the chair and just stands there until someone notices he's standing. If someone doesn't notice quickly enough, he'll yell out, 'I'm STANDING!' And smile at you with this wonderfully proud and happy face.
Last night Caedmon decided he needed to move a bit more. He stood for a moment, leaned as far as he could toward the kitchen cabinet a few feet away, then walked a step and a half before falling into the cabinet. Mama was surprised and proud. Of course, when Daddy came home ten minutes later and heard about it he tried to get Caedmon to repeat the event with no success.
This afternoon Caedmon was playing the standing game on a rug we have in the living room. All around the rug is hardwood flooring. I was busy making bread dough and looking up occasionally to see what he was up to. I heard his braces on the wood and heard him say, 'I'm WALKING!' but he loves to lay on the wood and wack his braces as hard as he can for the sound it makes and for some reason I imagined that's what he was doing until it registered what he was saying. By the time I looked up he had crashed but he was a full five feet from where he started. So, we made up a new game. He stood by the easel, I stood by the kitchen table and when he said, 'GO!' we started walking toward one another and tried to reach each other to give big hugs.

The first time he reached me I was so overwhelmed with emotions it was hard not to cry and not to hug him too hard. We played for about 30 minutes, then I tried to video tape some while he did it himself. A couple of times he almost made it ten feet, all in the course of an hour! When Brother and Daddy got home Brother was totally into the new game. So here is some video of our boy's first steps on his own!

Original Blog Post: February 18, 2011- Ten Steps Forward, One Step Back

2011-05-04T20:32:00.001-05:00

Last week Caedmon's cast came off and we discovered that he never had a fracture. This is wonderful news! The next day he was right back in the pool again and we picked up with therapy as if no time had been lost.

The weather, for five straight days, was above freezing and just beautiful. The boys enjoyed every second of sunlight every day, playing out on our deck which is snow and ice free and just waiting for some happy feet. Caedmon played tag and soccer using his walker or Mommy's hand and loved the freedom.
Yesterday, at therapy, Caedmon took two sets of five steps all by himself! Later in the afternoon he wanted to play wrestling. He would roll on me, then push up off my side and stand, sometimes for a little while and sometimes for a minute or longer, before falling on his rump and laughing hysterically. What a great day!

Today, Caedmon crawled AFO-less from his bedroom to the living room. This is not a long distance at all, maybe twenty feet. And, abracadabra, we have a swollen purple ankle again. We are taking it easy today: leaving the AFO on for protection, taking it off every so often to check if things are better or worse. We are also praying that it will heal very quickly. It's so frustrating to move backwards!

Original Blog Post: January 31, 2011- There Is Still Fun To Be Had

2011-05-04T20:31:00.001-05:00

Yes, even with a boy in a cast, frigid temperatures and icy roads. 'What can you do?' you say. Why, bring the snow INSIDE of course. The bonus: boys who love to make snowmen and snowballs but can't because it is just too freakin' cold outside can build to their heart's content, until it melts that is.

Of course, some of you may be wondering, what in the world is one of your boys doing in a cast! We had been warned from Day 1 of Caedmon's life that children who wear braces and particularly those with SB myelomeningocele are more susceptible to fractures. We had counted our blessings that we had not had that particular experience yet.

Last Wednesday, as Caedmon was having his hour of free time without AFOs (braces) I noticed a very large, very ugly, very purple ankle. Upon further investigation I noticed a lot of swelling. This was not good. Adam took him in right away to our pediatrician. They took an x-ray, told him everything looked fine and to keep him off of it as much as possible, elevate the foot and put ice on it. Well, we laughed a bit, wondering how in the world we were going to do that but determined to try our best.

When we went another two days with no change and Caedmon as active as ever we decided it would be good to get a second opinion from someone who works quite often with kids who have SB. We called our orthopedist. He looked over the x-rays and told us that just because you can't see a fracture doesn't mean one isn't there. As a precaution he put a cast on Caedmon for the next 10 days. Then, we'll go back for another x-ray to see if there is any new bone growth. If there is, we'll know he did have a fracture, if not, well, at least his ankle will be healed. So, now to find entertainment for the next 10 days.

Original Blog Post: January 24, 2011- Standing Progress

2011-05-04T20:29:00.001-05:00

Caedmon must be in the middle of a developmental growth spurt because he's been doing so many awesome things in the past five days.

He's missed a week of aquatherapy because of illness so when he went this last Thursday I was not expecting much, just maybe catching up to where he had been before he missed. But, almost right away, he stood in the water by himself, totally oblivious to the fact that his therapist had moved away from him, watching the ladies one pool over using medicine balls in their aquatherapy class. He then took almost two steps forward before losing his balance!

Later that same day, Caedmon was 'driving' his ride-on train toy(another new development, being able to push with his feet), when he stood up with only his leg strength and announced, 'I'm standing!' He did it a couple more times for effect with a huge smile on his face. It was a tear-jerker moment.
Then on Saturday at church he decided he wanted to 'help' me stand up from the floor. He pulled himself up to stand next to me then completely let go of me and pushed me with both his hands, perfectly balanced. He pushed three times before pushing himself over. I was telling Adam about it a little later and Adam told Caedmon to 'Help Mommy again.' (I happened to be on the floor again.) And Caedmon pulled himself up again and did it.
We can't wait to see what the coming week brings!

Damek is learning how to work a video camera. Here is a fun little clip of the boys, sorry about the lighting!

Original Blog Post: January 17, 2011- Defining Yourself

2011-05-04T20:28:00.001-05:00

Being fairly new to the world of parenting and even newer to to the world of parenting a child with special needs, I find I have a lot to learn . . . on everything.

A big lesson I am learning now that Caedmon is mobile and wanting to play on playgrounds and with other children is that people (parents and kids) look to me to see how they should respond to him. When they ask questions about him they will pay attention to how I answer the questions even more then the words I say. If I answer in a matter-of-fact way, nonchalantly and at ease, they will interact with him in the same manner. If I answer in a fearful, concerned way they will show pity and back away, a bit fearfully.

I've also been learning that the way I answer questions depends on where my focus is on a particular day. For example, if I am concerned about an upcoming exam or worried about how his shunt is functioning, I will answer in a concerned and worried way and the people will respond in part. If I am focused on how beautiful he is and what a joy he is, I will answer in that same joyous manner and people will see how amazing he is. It never fails.
I believe this is the difference between definition and description. What my focus is on is what I use to define. When my focus is on his diagnosis and defect it defines him and that is all the people around me see in him. When my focus is on who he is as a person, his worth as a child of God and his value as a human being, that is what the people around me see too. His difficulties become merely descriptions of why he needs a walker or why there is a bump on his head but are not who he is.

This is something I want to model for him and pass on to him. However, I've realized that I have the same problem with my own character defects. Too often I allow my mind to define myself by the times I have screwed up, the things I have said wrong, the people I have hurt, rather then to let those be descriptions of moments of weakness. I am not my mistakes, I am a worthwhile daughter of God who has made mistakes and learns from them everyday.

That is a lesson worth passing on.

Original Blog Post: January 5, 2011- And Now For Something Completely Different

2011-05-04T20:26:00.001-05:00

The Boys and Their Toys

Working hard on their Christmas laptops.

Caedmon's first sledding experience. He started loving it when Daddy quit kicking waves of snow into his face. Tee hee! (For the record, Daddy was riding with him and trying to slow them down and didn't realize what he was doing until they got to the bottom and Caedmon's face was totally caked in snow.)

Our social butterfly making another new friend.

He's very focused: places to go, people to see, obstacles to ram into.

A cool hand-pump tricycle at a local indoor playground.

Original Blog Post: January 4, 2011- Washing Feet

2011-05-04T20:24:00.001-05:00

Communion is celebrated in many different Christian denominations. It can be a burden for some and it can scare some away but for me it has always been a powerful reminder of the price Jesus paid on the cross and who I am in Him.

Our church combines a footwashing element with the bread and wine (juice, as the case may be), following Jesus' example with His disciples during the Last Supper (see John 13:4-14). This is almost more powerful for me then the actual taking of the bread and wine. There is such an honest humility and servitude that comes with washing another person's feet.

I have witnessed and been a part of so many moving experiences during this part of the celebration. There was the time when a friend I was at odds with crossed the imagined mountains between us and when we knelt before each other the mountains had miraculously been moved, times when those society would deem beautiful would seek out or be sought out by those our society would deem unlovely and as they washed away the dust of a summer day the labels would be washed away too, times when, as feet were washed, a song rose from the lips of many different generations into one voice and the barriers that kept us apart suddenly didn't seem so real or so important. God moves at times like these.

This last Sabbath, as we celebrated New Years Day by observing the communion service, I was given the gift of the most meaningful footwashing service. Adam and I took our children with us to the footwashing area so they could at least observe what we did even if they didn't want to or weren't ready to participate. Our oldest watched and prayed with us then ran back to our seats in the sanctuary. Our youngest watched quietly and just before we left the area he said, 'Do it too! Me too!' Adam and I looked at each other for a moment. We both had to be up front, we both had leadership roles in the service. We could easily have said, 'Not now, next time.' But we couldn't. We quickly took off his shoes, his braces, his socks.
As Adam started to lower his little, crooked, spindly feet into the water my mind flashed to the story of the Pool of Bethesda. John, in John 5, talks about this pool where all manner of people with disabilities would wait for the water to move. The Amplified Bible, in verse 3, describes the people as 'some blind, some crippled, and some paralyzed (shriveled up)'. It was believed that the angel of the Lord was moving the water and the first person to touch the water would be healed. He goes on to describe a certain man who had been suffering for 38 years. Jesus goes specifically to him, 'knowing he had been a long time in that condition' (verse 6) and asks him if he really wants to be healed. The man doesn't even answer the question. He complains about no one being there to help him get to the water. In my mind, I hear the man's thoughts wondering if he sounds pitiful enough if this man and his friends will help him get to the water the next time it moves. Surely with all these people he'll definitely make it first! Then Jesus answers the true cry of his heart and heals him!

The point is, the man is touched not by the water of the pool but by the Living Water and instantly he is healed. What is Jesus purpose for this man? Why does He heal him? In verse 14 it says Jesus found him in the temple later and points out that he is healed and tells him to stop sinning or 'something worse will happen'. This is not a threat from Jesus, He's not saying, 'Shape up or else!' He's letting him know there are worse things that could happen to you then being crippled for 38 years. Do you see? The purpose was not so he could have the few rest of the years of this life in relative ease and comfort but to change the direction of his life for eternity.
This is what I wish for my boys. That they would be touched by the Living Water and so realize that they are worthy and acceptable and capable because of Jesus love for them, not because of what they can or can't do, not because of the people they know or don't know, not because of their wisdom or skill or strength, but because they ARE, they exist.
This is my wish for me too, and for you.

http://www.youtube.com/watch?v=dlwNoLmhPfM

Original Blog Post: December 23, 2010- A Grateful Heart

2011-05-04T20:22:00.001-05:00

What does it mean to live thankfully?

I have just begun to realize how much I have taken for granted, how many blessings I have had and have and how oblivious I have been to them, wishing for that next great thing maybe or maybe wishing my life were different in some way, never fully appreciating life as a gift and seeing all the opportunities God takes to show His love. In the last three years I have become amazingly aware of how much God has given me, how wonderful my life is, what an amazing family I have and an incredible husband that supports me and helps me grow better then I would ever be by myself.

It's an irony, really, that these realizations would hit me now. It's not as if our ship has come in or we have an amazing stockpile of wealth. In fact, by the world's standards, we would probably be considered worse off then we were three years ago. It reminded me of the verse in the Philippians 4 that talks about contentment:

¹² I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. ¹³ I can do all this through him who gives me strength.

I never read the following verse, verse 13, or if I did I scanned it quickly and didn't allow it to sink in: I can do all this through Him who gives me strength. The secret to finding contentment in anything.

This Christmas I just wanted to say thank you. First, to the Lord for His rich blessings and abounding love. Second, to all my friends and family who have somehow loved me through all my years of selfish and blind living. I am just beginning to learn what generosity truly means and how to be a friend. I hope I have many opportunities to show you over the many years to come.

Merry Christmas!

Original Blog Post: December 20, 2010- Joy To The World!

2011-05-04T20:21:00.001-05:00

The medical appointments have come to an end. Caedmon has passed everything with flying colors, except needing to up his medication a bit but we can handle that. He has an eye appointment in January and then we are done until spring check-ups. We are looking forward to a peaceful Christmas and New Years at home.

I've been thinking about the year Caedmon was born and how we spent Christmas in the hospital and returned to the hospital a day after New Years. Everything seemed like such a whirlwind and I prayed for a time we could be at home, together, as a family, and things would seem boring and routine. I'm very grateful for that this Christmas!

We were able to save up for a special family Christmas gift, a new camera! A Nikon, to be exact; I feel like I'm growing up. So, yesterday while Daddy and Damek went ice skating with Santa, Caedmon and I took a nap and then played with our new gift. Well, I played with the gift, he played the guitar. Later, we caught some bedtime sillies. Caedmon's laugh is a gift to the world!

Original Blog Post: December 14, 2010- More Tests

2011-05-04T20:19:00.001-05:00

Trying to fit all the tests Caedmon needs before the new year makes for a very busy December! We kick off this busy week with a three hour urodynamics study that will look at his kidney, bladders and pipes to make sure everything's flowing the right way and healthy. We also get to see how well his medication is working and if he is on the right dosage. All very good things to know! Why they always schedule us during his naptime is a mystery and frustration to me, but he's a good natured guy and will keep smiling to the end, I'm sure.
We're still waiting a letter from the neurosurgeon with the results of last week's MRI. We're not expecting any bad news but it will be nice to know what is going on with his spine and brain. Tethered cord is always a possibility as there can be a lot of scar tissue where the back surgery occurred.
We continue to enjoy our snow mountains. Damek made a great sledding run in our neighbor's empty lot/snow storage area. We plan to have a good afternoon enjoying the heat wave (10 degrees today, woo hoo!) and the winter landscape.

Original Blog Post: December 11, 2010- The Blizzard Of 2010

2011-05-04T20:18:00.001-05:00

This week we have passed down the family head cold rather then blessings or an inheritance so it was perfect timing when the snow storm hit just as Adam and I were saying, 'How are we going to do anything at church this week, we can barely function?!' Instead, our kids got to lead us in worship for a change.

Mostly because we can't seem to move off the couch, except to try to shovel out our drive whenever the snowplow comes by or our dog needs out. I think the plow has actually given up because the last time I was out with the dog you couldn't even tell where the road was. A neighbor told me, as we were digging his car out, that our little town is supposed to be the apex of the storm, we are slated to get the most snow. Good thing I just made four batches of Christmas cookies yesterday, if nothing else they'll help us survive until we can get out of the neighborhood.

Here's the view from our house today. Our 'front door' that actually faces the south has two large drifts in front of it and one above it. The cars in our drive, the blury stuff is not because I was shaking but the snow whipping around in the wind. We've actually scooped snow twice today but you can't tell at all.

Here is Caedmon's contribution to the worship service. He's in love with the guitar and has actually given himself two sets of guitar blisters and begs to play more. He's been playing a little everyday and seems to have some nice callouses starting so hopefully the blisters are done now. I'm really hoping his love for music continues.

Original Blog Post: December 6, 2010- Happy Post-Thanksgiving!

2011-05-04T20:15:00.001-05:00

We had a lovely trip out to Colorado to visit family this Thanksgiving. We haven't been out in a year and a half so it was nice to see everyone and have Caedmon meet them. He's still talking about Emmy, Cassie and Sam, his three cousins. We did a few touristy things, Garden of the Gods, Colorado Creamery, driving up Cheyenne Mountain at sunrise. (Maybe not the last one.) And we got to meet Grandma's puppy.

We got home just in time to celebrate Caedmon's second birthday. Yes, he's TWO! I can't believe it!

This morning Caedmon is on his way to Children's for a scheduled MRI. They're actually going to try not putting him completely under but instead using a drug that quickly wears off. Always before they've been nervous because of his sleep apnea, but he appears to have grown out of or almost grown out of it. We are praying everything goes very smoothly. Here's a happy-Caedmon video from our trip, in honor of his birthday and to cheer mommy up as he goes to the hospital.

Original Blog Post: November 8, 2010- A Loooooong Day

2011-05-04T20:12:00.001-05:00

Tomorrow is Caedmon's yearly check-up of all things internal. He will have a CT scan followed by several ultrasounds to check his innards and make sure everything is working properly. They will also be seeing if the medication he's on is helping his bladder fill to capacity or if they need to up the dosage. All wrapped up in a pre-Christmas package is a trip to the spina bifida clinic to meet with all the doctors. It will be a long day!

If you have a moment to say a prayer for Caedmon and his doctors tomorrow we would appreciate it so much. A big thing for us, the parents, is the checking of fluid on his brain and the medos valve on his shunt to make sure it is operating properly and is at the right setting or if they should adjust it. He hasn't had any problems that we can tell but I'm thankful that they schedule this yearly test to hopefully catch any issues before they become major problems.

Speaking of shunts, I just learned a bit of the history behind how shunts were created and how this remarkable dad, with no medical training, wanted to save his son who had been born with spina bifida and in so doing has saved thousands of lives. You can read the story here: http://mindhacks.com/2007/04/17/john-holter-brain-engineer/

We've also have just learned that at the beginning of December he will be going in for a full spinal and head MRI, during which Caedmon will have to be sedated. I really don't do well when he has to be sedated. I'm praying for some peace during that one!

Original Blog Post: October 27, 2010- The Wonder Of Poop

2011-05-04T20:10:00.001-05:00

When Caedmon was still an echo in my tummy (as big brother calls it), one of the things we were informed of was that Caedmon would have difficulty with bladder and bowel function. The nerves that serve this area of the body were definitely affected by the spinal opening they could see even then. They could not tell us what extent things would or would not work but they could tell us there would be trouble. For some reason, this was really scary to me, almost on par with his possible need for a shunt in his brain.

So far, we have never had to catheterize Caedmon. He has been able to empty his bladder. Because of the lack of muscle control in this area, we believe that eventually he/we will have to start cathing but I am thankful for not having to do it yet.

The excitement in our house, though, has been that over the past month Caedmon has consistently told us when he needs to poop, BEFORE it happens! This means that he has feeling, that he can sense that there is poop ready to come out! What a blessed, wonderful thing! It's just another little thing that I never spent time thinking of or marvelling about; how our bodies are created in such an amazing way, how everything complexly works together to perform even the tiniest function, and how difficult life can be when these things do not work properly.

Today, we are celebrating poop!

Original Blog Post: October 19, 2010- Spina Bifida Awareness Month

2011-05-04T20:08:00.001-05:00

The moms in one of the SB boards I'm on created this on Facebook. We now have over 1000 people committed to praying on Wednesday. Won't you please join us?

Spina Bifida Kids Worldwide Day of Prayer

Time	Wednesday, October 20 · 12:00pm - 1:00pm EST

Location	Wherever you are



	October is Spina Bifida Awareness Month, and we SB moms have on our minds, more than anything, the precious unborn babies who are so often terminated before they even have a chance to prove their lives have meaning and value to the world. To say that 50% of all Spina Bifida affected pregnancies are terminated is a conservative estimate. But we SB moms know there is no reason to terminate a baby because of SB. Our children are be...autiful and intelligent gifts from God who have every opportunity to live full, productive, and totally normal yet extraordinary lives. So we proclaim Wednesday, October 20 as the Spina Bifida Kids Worldwide Day of Prayer. We believe in the power of prayer, and we are excited at the prospect of many people praying at the same time for these unborn babies. We moms can make a difference individually and collectively, but that is nothing compared to the change that can come if we have God on our side. We will begin at noon EST. Pray for as long as you feel led. Pray individually or with another person or group. On your knees, at your desk, while driving your car … the logistics do not matter. Here are a few things you can pray about specifically: 1. There is one woman in particular who is on our hearts. God knows who she is. She is expecting a child with Spina Bifida, and she is afraid and considering termination. Today (Wednesday) is her appointment with a pediatric neurosurgeon to find out the severity of her baby’s case and to learn more about the diagnosis. Please pray that she will go to this appointment with an open heart and mind, that the doctor will give her a prognosis that is realistic and hopeful (we believe these adjectives are not mutually exclusive when talking about SB), and that most of all, God will give this woman a peace beyond understanding and a clear indication that she should keep her baby or give it up for adoption. There are many mothers willing to adopt this baby. 2. Obstetricians are usually the doctors who first diagnose Spina Bifida based on a prenatal ultrasound. Unfortunately, most know very little about SB except for what to look for on the ultrasound. Many of us were told by our OBs very scary and inaccurate information, such as “Your baby will likely not survive,” “She will be a vegetable,” “Terminating is the most loving thing you can do for this baby.” If this is the first time you’ve really even heard of SB, and a doctor you trust tells you this, you’re probably going to believe it. Please pray that these doctors will be educated about the SB prognosis so that they can give the diagnosis accurately and compassionately. 3. We SB moms will always remember the day we received the diagnosis as one of the most terrifying days of our lives. An initial grief response is denial, which often presents as “Please make this problem go away.” Termination is offered quickly. Please pray for these mothers and fathers, that they will first and foremost trust God to get them through this scary and uncertain time instead of letting fear guide their decisions. That God will draw near to them and make His presence known, as He did for so many of us. That these parents will be so filled with His peace about the future and love for their child that they will consider carrying the baby to term the easiest choice. 4. These precious babies are absolutely innocent and helpless. They are being thrown away because they are not “perfect.” Not one of us is perfect. Please pray for the lives of these babies to be spared. That each movement and kick will remind the mother that God knit that baby in her womb exactly as he or she should be. That their lives will bring glory to our Father. 5. Many of us SB parents cite the support of our family members and friends as the biggest comfort during the time right after receiving the diagnosis. But there are also families and friends who are unsupportive and even encouraging of termination. Please pray for these family members and friends, that God will use them to minister healing to the parents’ breaking hearts. That they will be wholly supportive, not hurtful, and they will lift up and help these parents as their raise their child. Feel free to add other suggestions for what we should pray. And please pass this on to friends, family, church prayer groups, prayer warriors, pastors, and strangers. “Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them.” Matthew 18:19-20 (NIV)

Original Blog Post: October 8, 2010- Twenty New Grandmas

2011-05-04T20:05:00.001-05:00

Caedmon got in the pool for the first time yesterday. He loved it! Not only because he enjoys water and there were awesome toys but also because there was an aqua aerobics class going on in the pool right next to ours. That's right, twenty new ladies for him to charm with his dimple and sunshine smile. The therapist could hardly get him to focus on his stuff because he kept hearing the music and watching the teacher who was dancing up on the pool deck. After a song would end he would clap his hands, his therapist thought this was a riot. When his therapy session ended she walked us to the dressing rooms, which went right past the ladies. She stopped and told them all how much Caedmon had enjoyed them and had been clapping for them. As if on cue, all the ladies started clapping. Caedmon was amazed. When they stopped he smiled at them all and waved bye bye. I'm sure in the next weeks and months to come there will be many such interactions. It's like having twenty new grandmas!

Original Blog Post: October 3, 2010- A New Step In Walking!!!!

2011-05-04T20:04:00.001-05:00

I wish I could express through written word my total amazement, joy, elation, disbelief at the fact that yesterday at church Caedmon stood up (with the help of a pew), grabbed ONE of my hands and walked down half the length of the sanctuary NEXT to me!

These moments, when he does something that seems so normal for a normally functioning child to do, stops the world and my heart for just a moment.
I was almost in tears and I couldn't even express to the people standing around witnessing it that they were in the middle of a MIRACLE! None of them even realized it, how could they? They made little cooing sounds and talked about how cute he was and I was wanting to shout and dance around singing, 'Thank You, Jesus!' It was such a strange dichotomy: regular people commenting on a toddler walking and ecstatic me floating in the clouds all living the same moment from completely different worlds!

Original Blog Post: September 29, 2010- Aquaman

2011-05-04T15:42:00.001-05:00

Waiting lists are such a pain! I've never had the need for specialized therapy and so have never had the opportunity to be told that a clinic is all full but they will call when they have an opening. Did you know hippotherapy in the Twin Cities area has a full one year long waiting list?! Oofta!

Anyhow, after two months of being on the waiting list, Caedmon finally got in to meet his latest teammate. PT Trisha will be his land-based therapist for a few weeks so she can teach mom and dad all the tools and techniques we can do at home to help him get stronger. Next Thursday we, Caedmon and Mama, get in the water with his water-based therapist. I am really, really excited and, after seeing Caedmon's reaction to the pool through the windows, I know he will run right into that pool, or crawl, as the case may be!

Tonja said she thinks aquatherapy is right where he needs to be. She also told me at the end of our appointment that he is doing awesome and Adam and I are on top of things! That was really nice to hear because my biggest fear is that we're missing the boat on something important that will effect him later on.
I need to get some recent video of Caedmon. He is really having a ball with his walker. He's such a daredevil! He will head straight off curbs or up them, he loves to follow his brother up grassy hills, over rocks, anywhere. As we were leaving the therapy appointment, Damek climbed up on a circular bench two feet off the ground and Caedmon walked right up to it and tried to lift his front wheels onto it. It was way too narrow for him but he totally would have attempted it had Mama let him.

Original Blog Post: September 1, 2010- Caedmon's Journey To Walking, Part 1

2011-05-04T15:41:00.001-05:00

Original Blog Post: August 16, 2010- Walker? I Don't Need No Stinkin' Walker!

2011-05-04T15:40:00.001-05:00

Just to clarify, he is technically using a walker in the video, but it's a toy one, not the several thousand dollar one that is on its way to our house.
Yesterday, Caedmon decided that what he really wanted to do was run. He pulled himself up on the walker we've had sitting around since he was born and went racing off across the living room. He then pushed it out the door to the deck and ran across the deck several times. By the time I got the camera out and running he was losing interest. I did catch a bit of the action, though.

Original Blog Post: August 11, 2010- The Walker Is On The Way!

2011-05-04T15:38:00.003-05:00

We left the first clinic because of a recommendation by our pediatrician's nurse that we get the walker prescription from our physiotherapist and go to another clinic to get it filled. Because of listening to her wise and wonderful advice, we put in the order this morning for the reverse walker/gait trainer and should be receiving it sometime next week. We are so thrilled and look forward to Caedmon being even more mobile!

Original Blog Post: August 9, 2010- Little Blessings

2011-05-04T15:38:00.001-05:00

I never thought about what a difference having nurses and doctors that really love their jobs and their patients would make until Caedmon came along. Sometimes I feel so full of thankfulness it hurts.

Thanks to a beautiful, amazing nurse who went way above and beyond the call of duty, Caedmon has a prescription for his walker in hand and we will meet to fit him for it on Wednesday. We may actually get it on Wednesday but we may have to wait a couple more weeks depending on if they have one that fits him in stock or they need to order it. This is opposed to the 8 week rigamarole that the other clinic was having us go through before we even got the prescription! We are very, very grateful!

Original Blog Post: August 3, 2010- Family Camping

2011-05-04T15:37:00.001-05:00

We spent a wonderful couple of days up north, beating the heat, enjoying the cool nights, stars, wildflowers, carnivorous plants, squirrels with hutzpa and children who do not sleep well when excited for camping.

We had a little cabin in the woods. Look how tiny and cute it was! We were pretty sure we weren't going to fit in there when we pulled up, but it worked great.

Damek went fishing for the first time. He didn't catch anything, mostly because we didn't get him live bait. He said he needed to find some fish that liked bright orange worms. Much to Mommy's relief, he didn't find any.

I was so excited to take the kids out on a rowboat for their first time. I used to row all the time when I visited my grandparents during the summer. Good, good memories. It made me happy to hear Damek say that this was his favorite part of the trip.

Caedmon had a great time crawling all over our campground. He left tracks everywhere, our own little wildlife.

He even tried climbing a few trees.

Sometimes he'd let us hold him, for a minute.

It was such a beautiful place and a needed reminder of God's love and care for us all.

Original Blog Post: July 27, 2010- Walking Again Today

2011-05-04T15:35:00.001-05:00

I just have to have a bit of a complaint before I post the awesome video. I'm still not fully understanding how the whole evaluation process works, why it must go on as long as it does and what good is actually done over the course of the next eight weeks. We have a different physical therapist helping us because our appointments will mostly be on Mondays. The one we ended up with sent the gait trainer Caedmon used during our last appointment home with another family so there was none for him to use or 'try' today because that's the only one that fits him. What?! There seems to be some major holes in this evalutation theory.
That being said, after doing some preliminary stuff that looked a little silly to me, the PT from last week walked into the room and said to our new PT, 'Why don't you try hooking him up to the treadmill?' So, that's where we headed and here is the video.

Original Blog Post: July 23, 2010- Caedmon Walked!

2011-05-04T15:34:00.001-05:00

Yesterday afternoon Caedmon finally had his appointment with the physical therapy part of his orthopedics office. It took nearly two months to get in! We hooked him into a gait trainer, like a walker that goes behind him with straps that hold him into it so he can't just sit down. The therapist then pulled out some bubbles and as I blew them Caedmon tried to pop them and proceeded to walk across the entire length of room four or five times! It wasn't a huge room but both Caedmon and I were so excited we just giggled the whole time. The therapist, who was kept busy trying to help him straighten out his feet as he was stepping, kept saying, 'This is amazing! I've never seen something like this before! His legs MUST be tired by now!' All things that made this mama's heart almost burst and shed a few tears of joy. The therapist had set the height too low so sometimes Caedmon would get so excited he'd stand up straight and pick the whole thing up off the floor. He did AWESOME!
I wish I had video of his first steps. It was just the two of us and we were a little busy, so we're hoping the next appointment we will have the whole family in tow and can get footage. In the meantime, I've posted a video of the brothers wrestling together.
So what happens now, according to this clinic, is that they have to evaluate him over the next two months, coming in once a week. After that time they can finally put the order in for a gait trainer to be delivered to our home and then who knows how long after that the insurance will approve it and we'll finally get it. Oofta! I don't have enough patience for that, considering he wants to walk now! So, we are trying another avenue, a different clinic that we work with, just hoping their process is not so tedious and lengthy. We're praying we get the trainer sometime before six months is up!

Original Blog Post: June 13, 2010- Update On Both Boys

2011-05-04T15:32:00.001-05:00

Two weeks ago Damek earned his yellow belt in karate. It has been a lot of fun watching him in class. Mostly he just wants to play with the other kids. Listening to the teacher has been a work in progress, especially since Daddy is his teacher. His memory is just amazing. He has the ability to hear something in class once and then reproduce it perfectly at home a few days later. He definitely didn't get that from his Mama. Here's a couple pictures and some video of his belt test.

                      Celebratory spinning after getting their new belts.

                                               The new class of yellow belts.

                                                                    Damek working hard.
Mr. Caedmon had his appointment with the orthopedist last week. Part of the appointment was getting x-rays of his hips to check on development and whether they are still in place. We were so happy to learn that his hips are just perfect and no sign of either one coming out of its socket. We are praying for the continued health of his hips, hip surgery for an 18 month old just seems wrong somehow.
We received a bit of bad news in that his lower legs are not twisting into the correct position. The doctor will continue to have him wear twisters as long as they are strong enough to do something but it's looking like he will need surgery to break his lower legs and reset them into the correct place. They normally try to wait to do this surgery until the child is somewhere in the 5-10 year old range because if they do it too soon they often have to redo the surgery. Obviously we would love for Caedmon not to have to have this surgery. We are praying for his legs to come round right on their own.
However, Caedmon just continues to be mobile and active. Last week at church he found a toy shopping cart and proceeded to pull himself up to stand on it and walk half way across the room with a huge smile on his face. I couldn't believe it! I told his PT about it and she encouraged us to talk to his orthopedist about ordering him a reverse walker/gait trainer. The paperwork has been sent in and he should be getting evaluated and fitted for one in the next two weeks. We know he is going to be thrilled to be able to chase his brother around outside! We can't wait!
I'm including a longish video of Caedmon in the tub. He's making so many sounds and words, we don't always know what he's saying but it's enjoyable to hear him communicate. He loves to make the sound of a truck or boat or airplane and his absolute favorite thing right now is to pretend to talk on a phone.

Original Blog Post: May 7, 2010- Encouraging News And Answered Prayers

2011-05-04T15:31:00.001-05:00

This afternoon was our results show with the good doctor. We learned the wonderful news that Caedmon's body is functioning well; his kidneys, bladder and hoses are healthy; there is no reflux between his bladder and kidneys. We also had a surprise and funny answered prayer.
Last week during the last test Adam understood one of the doctors to say that Caedmon's bladder was filling to 25% and then spasmodically emptying. He was told that Caedmon would need to be put on Ditropan and that Ditropan can cause mood alterations for the worse. We were not happy with this news, especially since it is likely that Caedmon will have to be on this medication for the rest of his life. It also can mean that we will have to start catheterizing him because the medication relaxes the muscles so they quit doing their job.
Since hearing this news we have been praying for there to be a way for him to either only have to have a very small dosage or somehow not need it.
Today, the pediatrician explained to Adam that Caedmon was filling his bladder 75%, 25% was NOT filling. Well, needless to say, that is a huge difference in what we thought last week! He does still need to be put on the medication but he will start with a very low dosage because he is doing so well on his own. There is still a possibility that it can alter his mood but if that happens we will take him off the medication and re-evaluate our options.
Technically this was a misunderstanding, a communication gap, but if felt so much like an answer to prayer. Maybe God was preparing us to accept the diagnosis and feel positive about it instead of feeling let down. At any rate, we are grateful for the good news!

Original Blog Post: April 30, 2010- Little Joys

2011-05-04T15:29:00.001-05:00

Trying to hurry, heading out the door to an appointment, I hear Damek call excitedly, 'Mom! Come see what I did to your shoes!' In my head I'm seeing a dandelion or two shoved in them somewhere, he's been really into that lately and we have plenty in our front yard to choose from. I walk into the room and start seeing bits of shoelace scattered at random, my poor, forlorn looking running shoes are laced but sadly lacking the length that normally ties them into a bow.

'Wow!' I say. 'Looks like you gave my shoes a little haircut, huh?' He was so thrilled with his work, how do you punish that?

We had a talk later about not cutting things that aren't paper and he helped me pick out a new pair of shoelaces from the store. I think I read somewhere that four is the exploratory age, everything is a science experiment. Have to keep reminding myself of that.

Orginal Blog Post: April 18, 2010- Fearless Boy

2011-05-04T15:28:00.001-05:00

That would be Caedmon's superhero name, if he were a superhero! We've been having so much fun taking him to playgrounds and parks since the weather has finally warmed up.

Caedmon's biggest leap has been to start pulling himself up to stand on a little walking toy we got for one year old Damek. He's taken five steps with it. He always does these things the day after our PT was here so we think she needs to come more often!

At the end of this month Caedmon will be heading back to Children's for a three part test to check the healthiness of his kidneys and bladder. Should be a fun day.

Original Blog Post: February 23, 2010- Mr. Amazing

2011-05-04T15:27:00.001-05:00

Caedmon continues to amaze the professionals.

Last week was our one year evaluation by the school district's early intervention staff, made up of a special ed teacher and a physical therapist. The PT, Kiirsten, has been by far our best teammate in helping Caedmon developmentally. She comes about every six weeks to check on his progress and give us more homework assignments. When she came for the year evaluation she said, 'I was just here not too long ago so I'm sure he hasn't made a lot of developmental progress since he was doing so much new stuff the last time.' As if on cue, Caedmon stood up in a bear crawl (an important step to being able to stand up on his own and something Kiirsten had not seen him do) and then crawled over to the couch on all fours (something he's been doing consistently for the last three weeks but not since the last time she came), pulled himself up to stand and cruised along the side of the couch. I had never seen him cruise before, he does make steps toward something regularly but never along something! I couldn't believe it! Neither could Kiirsten! She said, 'Well, I was wrong!' And just sat shaking her head for a while in disbelief. I loved seeing someone who works with people with disabilities everyday be speechless about my son!

Before leaving, Kiirsten made sure I understood that Caedmon continually impressed her by how swiftly he picks up new skills and how much he is developing. On the chart of social, educational and developmental milestones he is at or above every single thing except being able to walk on his own. This is not a shock and we were all well aware that he would be behind in that area. What is shocking is that this is the ONLY area he is behind in. What a little miracle boy he is!

Watching the Olympics last night they had a special interview segment with Tom Brokaw and a family whose son was in a tragic snowboarding accident six weeks ago. The son was to be a strong competitor against Shaun White but now he has major brain damage and is having to learn to walk again. I was so impressed with the parent's, especially the mother's, attitude about it all. At one point in the interview she said how thankful she was that she got to see miracles happening every day as her son improves bit by bit. I loved how strong they were, not a bit deterred but determined to help their son be the best he can be in the midst of the circumstances. It was very inspiring for me.

Original Blog Post: February 14, 2010- A Little Bit Of Good

2011-05-04T15:25:00.001-05:00

In Christian circles a favorite scripture to remind someone who's going through hard times is 'God works all things for good to them that love Him.' We had the privilege of experiencing a bit of that this last week.
A young woman who has been attending our church off and on the last few months just gave birth to a beautiful little son. There were complications all throughout the pregnancy and when he was born she was told he was missing part of his sacrum. He was also born with club feet. Adam went to the hospital to pray with her and encourage her as she tried to process what this all meant. She told Adam that she has kept an image of Caedmon in her mind, how happy he is, how much he can do, and this has given her courage and hope for her baby's future. I would never wish any defect on any baby but living in this world I must be resigned to the fact that these things happen. I was moved to tears with the thought that this new mother, with all the stress I know she is under, finds a bit of comfort and goodness in the existence of my son. Thank you, Lord, for working for the good!

Original Blog Post: December 24, 2009- Early Christmas Present

2011-05-04T15:24:00.001-05:00

On Tuesday, Adam took Caedmon back to the orthotist to be fitted for his new braces. As part of the fun, because he is pulling himself up to stand and even taking small steps forward, he was also fitted with a tension belt. This fun new toy wraps around his waist, like a weight-lifter's belt, then wraps around either leg and attaches to a hook on the inside toe part of his braces. The tension will slowly and painlessly draw his lower leg around until his leg bone and feet will be in the correct position. It's been interesting to me how I have just gotten used to the direction of his feet because it caught me a little off guard to see them where they should be. I think even Caedmon noticed, I saw him looking at his feet and kicking them as if to say, 'Where did these come from?' We can now actually get shoes for him though we're a bit hesitant to let him wear them other then adventures outside because we don't want them to impede him standing and walking. Already he has been doing these less because of how the tension cords feel around his legs. I'm hoping through the next few days he'll feel these less and less and will soon be into everything again!

Original Blog Post: December 14, 2009- More Good News

2011-05-04T15:23:00.001-05:00

Wednesday was our orthopedic check-up and x-rays after a six month waiting period. Six months ago they took x-ray pictures of Caedmon's hips and discovered his left hip was not developing as quickly as the right hip. This could mean surgery in the future if the trend continues. I have been praying over those hips for the last six months. Any surgery that could be avoided is a good thing. So, on Wednesday, as we looked at the x-rays, we saw what we had been praying for. Development! It is still behind the other hip but there is something where six months ago there was nothing. Beautiful!

The good doctor was also completely amazed at our report of Caedmon standing up on everything he can find to pull himself up on. He repeated that usually children with his level of spina bifida usually do not start standing until 22 months or after. I just hugged Caedmon and smiled really big.

Caedmon was fitted for new boots (our name for his braces or AFOs). We get to choose what kind of design the boots will have. We're keeping the space theme, though not martians this time. When we pick them up we'll be able to go shopping for some shoes. It's been very difficult since the weather turned cold to know how many layers of socks to bundle his little feet into for enough protection. Can't wait to get some shoes!

Original Blog Post: December 2, 2009- One Year Old!

2011-05-04T15:22:00.001-05:00

To celebrate, here are some recent videos:
Standing! We finally caught him on video. You can even see him take a few steps, we're so excited! He also demonstrates a few other skills he's picked up.

Shushing. This is the new trick, learned pretty quickly at church one day. I couldn't believe it! I was trying to quiet him down, he loves to yell whenever Daddy's talking, and he turned to me and did it right back. So cute!

Happy birthday! Video taken this morning of our wonderful miracle boy.

Original Blog Post: November 11, 2009- We're So Excited!!!

2011-05-04T15:21:00.001-05:00

After being told by many different medical personnel that Caedmon would probably not try pulling up to stand, start standing or start walking until around 2 years old, we were totally shocked today when he tried to pull himself up not once but twice! It wasn't in the best place for him, on our brick fireplace of all things! But I was so thrilled, I just couldn't believe it. Unfortunately, his braces are so slick on the bottom that he just slid around and then fell onto his bottom. They do make shoes that fit around braces but we haven't been in a rush to buy them since he wasn't supposed to do this for another year and his feet would be a bit bigger then! I guess we'll be getting those shoes! Praise the Lord!

Original Blog Post: November 4, 2009- A Few Stressful Days

2011-05-04T15:19:00.001-05:00

Yesterday was Spina Bifida clinic. All concerned doctors conveniently share a little medical office space, disguised as an orthopedist's office the rest of the week, and come in one after the other to poke and prod and ask a lot of questions. Some doctors are much more thorough and helpful than others and I wonder why my insurance is paying the not-so-helpful ones $200+ for five minutes of, 'Well, he's looking great!'
We learned that in three months Caedmon will have the pleasure of having his bladder tested to see how large or small it is, how rigid or soft it is and whether or not we will have to put him on medication to make it larger and softer. Eventually he will need surgery to put a sort of floodgate in his ureter and he will learn how to cath himself as opposed to potty training.
Today was the MRI. I am always a mess the days leading up to him being put under anesthesia. I don't know why. I hope, eventually, I'll get used to it. I hate holding him and soothing him until the anesthesiologist takes him out of my arms and behind doors where I can't follow and I can't see what's happening. Adam and I did the tag team approach this week, where I took Caedmon to the clinic yesterday and Adam took him to the hospital today. It still didn't help. I was a mess all morning until I finally go the phone call that all went well and they were headed home. Adam said Caedmon watched him over the anesthesiologist's shoulder as they were walking away with a little alarm on his face. I think I would have broken down.
It was a joy to hear they were coming home. Another fear had been that they would keep him 24 hours for observation as they have done in the past because of his apnea. Thank the good Lord that was not the case this time. Apparently, he's old enough now that they do not worry about it so much and just observe how well he wakes up after the procedure.
Another blessing is Children's Hospital, well, actually, the staff. Everytime we go we run into a nurse who has helped him at some time in the past. They always remember him because of his name (it's rather unique) and come in to see how he's doing since the last time they saw him. This time, the nurse helping him was one of our nurses when we came back into the hospital at two weeks old to get a shunt placed. She's actually getting married in the summer and has been in contact with Adam to do their wedding. It was great to see her and chat with her!
We now wait until next week, when we will meet with someone in neurosurgery about the results and any other important information.
The real fun of the day was that it was almost a hospital sandwich. Damek was getting ready for bed and playing a come-and-get-me game with Adam, I was doing dishes in the kitchen. Damek raced into the kitchen and ran smack into the silverware drawer I had pulled out to put things away. Blood everywhere, a very scared boy, a pretty deep gash. We debated whether we should take him to the emergency room, but it quit bleeding fairly quickly and we sent him to bed with lots of kisses. We are grateful. A little too tired to patiently wait in an e.r. indefinitely!

Original Blog Post: November 1, 2009- The Long Month

2011-05-04T15:18:00.001-05:00

This is the month of a million doctor's visits and at least one hospital stay. We knew this was coming, we just thought it would be closer to Caedmon's one year birthday. We're grateful they have scheduled us for this month, actually, instead of trying to fit everything in between his birthday and Christmas. So, to start us off right, I thought I put a video of our incredibly joyous boy giggling.

Original Blog Post: October 28, 2009- Damek's First Dance Recital

2011-05-04T15:17:00.001-05:00

Our public school system here offers all kinds of fun classes to preschool age kids during the year. Since Damek loves music and performing we thought putting him in an introductory dance class would be a fun thing for him to try out. He loved it, even though he was the only boy. He had so much fun and would come home talking all about his teacher and a little girl named Makenna, who he insisted was his best friend.

Today was the final class and the last fifteen minutes of the class the parents were invited in to watch. Damek was so excited to see me come in the room and he did well for the first two minutes but as soon as the music started he wasn't so sure anymore. After he noticed all the people looking at him he had a slight melt down and sat on my lap for the rest of the performance.
I was so proud of him for going back week after week. I'm sure he must have felt a little out of place, as you'll see in the video, the only boy surrounded by lots of little girls in tutus. And that was every week, not just a special performance day thing! Sigh. I don't know if I'd know what to do with a girl! Damek loves dressing himself and the combinations he comes up with sometimes are breathtaking but I wouldn't want to change it for the world.

Original Blog Post: October 17, 2009- I Survived!

2011-05-04T15:16:00.001-05:00

Today was the much anticipated, and somewhat dreaded, half-marathon! These pictures were taken before I headed out the door. I flew solo today so the kids could have normal naptimes and be ready for church this afternoon. I decorated this shirt a few days ago and had a tag around my neck with a photo of the boys to help me if I started flailing.

All in all, it was a great race. I did not feel like stopping or quitting once and it went by so quickly. Most of you will laugh out loud when I tell you I finished in 2:19, mostly because I just said it went by quickly. But it really was just great. It was a beautiful, sunshiny day, our first in about two weeks. The course was hilly and extremely difficult between miles 6 and 11 but the scenery was breathtaking. It was run almost entirely in a state park on trails. I love trail running, I always have since I was a little girl. The downhill parts I would just relax and let myself fly like I used to do racing my brothers down mountain trails, whizzing past huffing and puffing tourists. It felt great! The uphill parts were tough, I ran slower then I would have gone walking but one of my goals was to run the whole way. I did end up walking the very last hill at mile 11. I had started running a little harder because I thought the hills were all done and when I saw that last hill laughing at me I just knew I needed to walk it so I could finish the last two miles strong.

Adam made up a playlist for my iPod, that helped a lot too. Marvin Gaye brought me through several hills with 'Ain't No Mountain High Enough', Aretha helped me pick up my speed as soon as I heard, 'What you want, Baby, I got it . . .', Mary Mary pulled me into the finish singing, 'That's the sound of victory, yeah, that's the sound of no defeat, yeah, that's the sound of holding on, yeah, that's the sound of STAYING STRONG!' The only bad choice, that he had no way of knowing, was putting Caedmon's song, 'Find Your Wings', at mile 10. I almost lost it and had to stop. I don't know where the emotion came from but I started sobbing. It's hard to get your breath running when you're crying!

Anyway, I finished with energy to spare and I think I could actually pull off a marathon! Maybe Grandma's in the spring? It's possible!

Original Blog Post: October 13, 2009- Caedmon's New Toy

2011-05-04T15:15:00.001-05:00

Caedmon had his regular physical therapy and special education check-up today. Part of the fun was Kiirsten, the PT, bringing a stander for us to try out. I don't know the technical name for it, she just calls it a stander so that's what we call it too. The goal is to keep him in it a little more at a time until we reach the optimum 30 minutes twice a day time frame. The thought today was just to put him in as long as possible without him getting upset. We don't want him to associate it with negative feelings. Well, he lasted an amazing 15 minutes the first time. This afternoon we put him in again and he went 20 minutes. It's so new right now I'm not really surprised. We'll see in a week or so how patient he is with Mommy strapping him in. Again, I apologize for the sideways video. I tried a different way this time and it still didn't work to straighten it out!

The purpose, as you may guess from looking at the contraption, is to get Caedmon to use his leg muscles on a regular basis for a long period of time. We've been doing standing exercises with him with Adam holding him up in the standing position and myself holding his feet in the right angle on the floor. He tolerated this for the last three months but he just realized that if he goes totally limp Adam can't hold him up. Little stinker! So, we were very happy when Kiirsten called and said the school district had an extra stander we could try out. This will hopefully get his brain and leg muscles working together to eventually get him standing on his own and walking.

Original Blog Post: October 12, 2009- The Adorable Waving Baby

2011-05-04T15:14:00.001-05:00

Adam took the boys yesterday to Once Upon A Child, a great consignment store for kiddos. He got all our winter necessities and found some adorable hats for Caedmon. I was very impressed with his finds. Anyway, it was just in time because we woke up this morning to three inches of snow and more falling. This afternoon the sun came out a bit and I decided it was time to get out and stretch our legs. I took this video of Caedmon because he looks so darn cute in that hat and I've been trying to get him waving. I wish I had taken the camera with us on the walk because Damek and I started a snowball fight and Caedmon thought it was the funniest thing ever. If the world could hear him giggle everyday it would be a much more peaceful and joyfilled place!

I'm not the biggest computer dunce in the world, but sometimes my videos load the right way and sometimes they don't. Please don't get a kink in your neck!

Original Blog Post: September 23, 2009- Mama's Retreat

2011-05-04T15:12:00.001-05:00

From Sunday afternoon to Tuesday morning I went on a personal retreat to the north shore of Minnesota. We've been having such glorious weather here and Monday, my one full day away, was no exception. I drove up to Split Rock State Park. It's a breathtaking park that hugs the Lake Superior lakeshore and includes a lighthouse built over a hundred years ago and ruins of an old fishing village built by Norwegian settlers a hundred and fifty years ago.

The only camping sites are cart-in, kayak-in or pack-in. Since I haven't packed in for a long, long time, I chose the cart-in option. Not knowing what to expect but figuring I could make several trips if need be, I wasn't too picky about what I brought. I didn't even check out the path when I got there but loaded everything I had onto my little cart and started to my campsite. The very first turn in the road showed me an awesome view of the lake and a very steep hill. I had to lean back with everything I had to keep that little cart from shooting down that hill and out into the lake. I took baby steps, almost slipped once, finally made it down, still about three more blocks to go. The next challenge was a small hill going up. Halfway up I lost momentum and nearly had to back up to get a running start but I muscled my way up that hill. Now, I had it down: slow on the downhills, fast on the uphills. I made it to the campsite and determined on the way out I would take two half loads!

As I was checking in the ranger told me that the campsite I'd reserved was the prettiest they had. I was excited about this because I'd actually tried to reserve a different one only to find out it had already been taken. When I got to the site I didn't unpack but instead headed down a few little paths that led me right out to the cliffs over looking the lake. Oh, so amazing. I praised God for my 'home'.

One path led me to this beautiful little bench, just for my campsite. The view from the bench is the lake one way, and the lighthouse and island the other.

The ranger warned me to keep my food in the provided bear-proof locker, not because of bears but because of the over-friendly chipmunks and squirrels in the area! Ha! She warned me not to keep any food in my tent whatsoever so as I was unpacking my cart I quickly stuck everything in and locked the door.

It turned out her warning was not overly exagerrated but the varmints were even friendlier then she communicated. My first night sleep was continuously interrupted by the scratch of little feet under my tent floor and all around me! Talk about disconcerting! I was constantly thumping the floor, trying to scare them off. It seems all my camping neighbors had brought their dogs with them so the whole of the rodent population was focused on my tent. They finally let up about 5, when we experienced a short rain shower. I finally got a couple hours of sleep.

On Monday, I headed out to explore the Superior Hiking Trail. There was a connecting trail a few miles from my campsite. The SHT, for those of you not familiar with it, currently runs over 235 miles from the Canadian border to Two Harbors, MN. When it's completed it will be more then 300 miles long and will be a segment of the North Country National Scenic Trail running from New York to North Dakota. Awesome! It was everything I had hoped. So much like Colorado, only without the spectacular peaks.

There's a rock formation several miles in that looks like a rock split in two. It's unknown if this is why the area was named split rock but I took a picture of it anyway. I also had a lovely foot spa at around the halfway point. It's the best spa I've ever been to!

Along the way, I met a little friend. He sat very still so I could get his picture for my boys.

I hiked about six miles of the SHT then headed to Gooseberry State Park, a few miles away. I took some lovely pictures there and splashed in the lake a bit. Such a lovely, wonderful day!

That night I experienced the varmints again, only worse. After just a few hours sleep the rain came with a steady vengeance. I packed up in the rain and debated my wisdom in a cart-in site as everything I had got soaking wet on the return trip to the parking lot. But it was still just so beautiful I couldn't be upset at all, and I was going home to my boys and my bed!

I'm very grateful for my amazing husband who encouraged me to go and who is so great with our boys that I didn't once worry about them.

Original Blog Post: September 3, 2009- First Eight Months

2011-05-04T15:07:00.001-05:00

I created this slideshow for our baby dedication. It's pretty amazing to see how far our little boy has come in just eight months!

Original Blog Post: August 18, 2009- Our Boys Are Growing Up!

2011-05-04T15:06:00.001-05:00

We have had a crazy two weeks of growth and development in our house!
Last week, Caedmon decided enough with the horizontal position and began sitting up. At first he did a great stretch over his legs, not quite enough muscle strength and control to get the totally upright posture. It didn't take him long, just a few days, before he started sitting up all the way and loving it! He gets the biggest, most proud smile on his face when he sits up. I tried to catch it on camera, I got a little of it.

Caedmon said his first words last week, 'Mama' came first followed closely by 'Dada' and 'hi'. He also has his two top teeth coming in and the two on either side will not be long. He had such an easy time of teething. Hardly any fuss, no fever, no crying, just alot of drooling.

We've visited six different doctors over the last two weeks, all for check-ups. He has been examined from stem to stern and found seaworthy. Seriously, he's had ultrasounds over various parts, lots of poking, prodding, looking, stretching, and everything has come out well. Some doctors will see him again in four months, when he turns a year, others are happy to see him in a year. We're very grateful for our healthy, growing boy!

Damek turned four last Thursday. In the last three days he has started pooping in the toilet (our last step in being fully potty trained!), riding his bike without his training wheels (which he picked up in less then five minutes, no kidding!), and writing words in his journal (he's known his letters for over a year now but he started writing!)! I couldn't believe it. I told him last night that he'd probably be leaving for college next week sometime.

So, these boys are just incredible and the world is a better place because they exist!

Original Blog Post: August 3, 2009- Caedmon's Crawling!

2011-05-04T15:04:00.001-05:00

Last Sunday Caedmon started crawling! He'd been inching for awhile, lunging forward when he wanted to grab something, but he finally got his legs in on the action. I'm not sure why the video keeps loading sideways, it's okay in my computer but for some reason keeps coming up here sideways but hopefully you can enjoy it anyway!

Original Blog Post: July 23, 2009- Last Day Of Swim Class

2011-05-04T15:03:00.001-05:00

I apologize for the grainy quality of the pictures. They had us sitting on the opposite side of the room from the kids, in the bleachers and, while I'm still dreaming for a really nice Nikon, it hasn't happened yet!

Damek was so adorable. He just sat on that top step the entire time unless the teacher called his name to do a skill. For the first half of class he just sat looking out at the pool and talked or sang to himself. I really wished I had a better camera then. He actually put his face in the water four or five times, when he started he wouldn't do it at all. Really good improvement. His teacher's name is Anna and we've heard so much about her over the last two weeks. We've never met her, because of how they set up the classes but she seemed really good with him from what I could tell about half a mile away!

Original Blog Post: July 19, 2009- He's Got Skills

2011-05-04T15:02:00.001-05:00

Caedmon just started waving yesterday, or maybe I just noticed it! At any rate here is a '3 minutes in the life of the Breiner family' video with Caedmon waving and showing off his sitting up abilities.

Original Blog Post: July 13, 2009- Test Results and Dedication

2011-05-04T15:01:00.001-05:00

We finally heard back from the good doctor on the pnuemogram study. He still has apnea though it seems to be holding steady. It hasn't worsened any so we were told to stay the course on his medication.

The night we got the results back, Caedmon started doing the gasping again. He hasn't done it for a couple of months so we thought maybe he'd outgrown it. Always before it would happen very late/early and we would be so out of it that by the time we got to his room to check on him he'd be done. Luckily, this time it was at 10:30. Adam raced up to his room, tiptoed in, trying to see what he's doing when this happens. We found out. He's dreaming and gasping in excitement! So, the pneumogram may have been a complete waste of time but at least we know he's doing well with his apnea, it's not getting any worse.
We also wanted to let everyone know that we will have a dedication service on August 8 for Caedmon at our church. Everyone is welcome though I know most of you are far far away. I will post the service here so you can be apart of it if you can't make it. If you are in the area and would like to come send me a message either on here or e-mail and I'll give you the details.

Here are some of the latest photos:
Our little gymnast. He's given himself a black eye swinging the braced foot all the way up!

The boys, their blankets and the pacifier.

Our first (with the exception of the lettuce) harvest from our container garden. The purple beans actually turn green when you cook them. They're so much fun and really good to eat!

Original Blog Post: June 29, 2009- Spontaneous Camping

2011-05-04T14:59:00.001-05:00

Needing a break and some space away, Adam and I decided at one o'clock yesterday afternoon to take off for a one night camping trip with our boys and the dog. Two hours later we had the car packed, both boys loaded, the dog in the back, and a state park chosen at random.
'Just before the duck'
Five minutes down the road our adventure was auspiciously christened by the maiming of a duck on our windshield, cracking it almost completely in half. A few minutes later, Adam realized he had forgotten the maps he had printed to show us how to get to the park but, loathe to retrace the eight minutes we had already spent in the car, insisted he would be able to find his way there. Two gas station stops for directions and twice the amount of time listed on Googlemaps for how long the trip should take, we pulled up to the ranger station five minutes before they closed. We breathed a sigh of relief because we do not believe in camping without a fire and all trucked in firewood is banned because of the ash borer scare. We would have had to turn around and come home.
'Firewood is also important when you forgot chairs'
It was a beautiful park, right on the bluffs above the Mississippi River. Our campsite was just a few feet through the forest away from a trail that hugged the edge of the bluffs and had amazing views of the river and the bluffs on the other side.

We got as much sleep as you can imagine parents of an enthusiastic three year old and his seven month old brother, both of whom get incredibly excited when sleeping in the same space together, and owners of a dog who gets very animated at the sound of raccoons in the vicinity would get. But it was so nice to wear the incredible perfume of smoke, bug spray and tent, eat delicious meals that would have tasted mediocre at home but were the best thing ever tasted at a campsite, make s'mores at dusk, actually see the stars, have just enough wind to deter even the hardiest Minnesota mosquito and hear the leaves dancing all night.

This morning, while Caedmon took a nap and Adam started packing up, Damek and I took off to explore the trail. We found a crazy steep switchback that led down to the waters edge after about 1/2 mile of hiking. My crosstraining workout was to carry Damek back up the trail, piggyback style, with him giggling the whole way and telling me to watch out for various things on the trail. It was harder then a four mile run, I can tell you!

Original Blog Post: June 12, 2009- Blueberries and Mommy and Daddy

2011-05-04T14:57:00.001-05:00

Caedmon is teething so we gave him frozen blueberries in a mesh bag that he can chew on. He loved them very much and didn't mind the mess a bit! Here's a couple shots of Caedmon so you can see how big he's getting and one with Mommy and her new shorn head. I seriously lost two pounds when they cut all my hair off. My head still feels as light as a feather, it's really a weird feeling.

Original Blog Post: June2, 2009- Chipmunks

2011-05-04T14:55:00.001-05:00

Act 1: Day 1-The Taste
Adam is on the phone with his parents when a certain 3 year old accomplice who shall remain nameless lets the dog out the door. She flies out the door, like a bullet from a gun, and in less time then it takes to say, "What the . . . " she has the head of a hapless chipmunk in her mouth. Munch. Adam grabs her, brings her inside. It's too late for poor Chip. His body is thrown, unceremoniously, into the dumpster.

Act 2: Day 2-The Glory
I am doing dishes upstairs, enjoying the breeze. I've left the sliding door open to the deck so the dog can come in and out at will. I hear a racket behind me and turn to see one of our cats and our dog racing through the living room. I think they are just playing, as happens occasionally. "Skoozie!" I whisper menacingly, "Leave the cat alone." The baby has just gone to sleep, not good for animal's health if said animal wakes up baby. I notice a rather guilty look on the dogs face as she slinks out the still open door. I notice a look of annoyance on the cat's face. I look again at the dog, now lying on the deck. I see her spit out the seemingly lifeless body of a chipmunk onto the deck and as I race toward her she chomps it twice and it's gone. Not without leaving behind the sounds of a desperate squeak, sounding disconcertingly exactly like a squeaky dog toy.

Act 3: Day 3-The Triumph
(I preface this act by saying we have a cat-made catdoor in our downstairs sliding screen door.)
I am talking with my mom on the phone and trying to put Caedmon's braces back on after his exercise time. I hear this strange meowing, starting downstairs but getting closer. I look up in time to see the same frustrated cat from Act 2 drop a seemingly lifeless chipmunk on the floor of the living room, ten feet away from me. She is so proud of herself she just flops down next to it, batting it gently with her paws and looking at me as if to say, "That stupid dog is not the only one who can do the catching around here. I brought this for you!" I completely flip out, hang up on my mom while talking incoherently, put the dog out on the deck before she can chomp this one, throw the cat out behind the dog, pace around a few seconds trying to figure out what I'm going to do, run downstairs for a broom and dustpan, grab mismatched winter gloves out of a closet, run back upstairs thanking God that Caedmon is sitting high up off of the floor, move tentatively toward the chipmunk expecting it at any moment to jump up and run straight for me, gently sweep it into the dustpan, move slowly towards the door, hit the dustpan against the door jam trying to get the door open. The chipmunk sits up, looks at me, jumps off the dustpan, runs into the corner next to the fireplace. Meanwhile, I see Cat #2 outside coming toward the door. I grab him, throw him in Caedmon's room, call the dog in off the deck, grab her collar, run her through the living room, throw her in Damek's room, always keeping an eye on the chipmunk, still in the corner. I open both doors, grab my broom and try to move the chipmunk in the right direction, wondering where Cat #1 is and if it will pounce on the chipmunk as soon as I get it out the door. Caedmon is having a total ball and thinks this is great entertainment and needs to happen everyday. I move the chipmunk within a foot of the door when he stops and starts running the other way. I leap over a chair and slide my broom toward him. He runs out the door. I slam it shut behind him, shut the other door, fly downstairs to see if I can locate Cat #1 who I see racing over to the side of the house after something. I'm right behind her and grab her just as I hear an alarmed squeal and chipmunk (from upstairs, I can tell from the cat slobber that's still wet on his back) races into a hole. I take Cat #1 into the house, drop her on the floor, shut the glass door, and reach for the chocolate.

Original Blog Post: June 2, 2009- Good Day!

2011-05-04T14:54:00.001-05:00

Caedmon got to have a visit with his orthopedist yesterday. The appointment was supposed to happen in two weeks but Adam happened to run into the doctor while he was waiting for Caedmon to come out of surgery a week and a half ago. It's a little strange because this doctor actually works out of a different hospital in a different town but he just happened to be there. Anyway, Adam explained some concerns we were having about Caedmon's feet not fitting well in the braces. After hearing Adam's description he suggested we come in earlier and prepared us for the likelihood of Caedmon getting recast with the possibility of further surgery if the casts don't help. So, I gave Caedmon a long, luxurious bath yesterday morning, getting used to thought of a baby in casts again. When the good doctor saw Caedmon's feet, though, and checked for flexibility and range of motion his tune changed to a lovely little ditty that went something like: we will fix up his braces and see how that goes over the next few months and possibly do casts if there is no change. Well, I sure liked that song a lot better, considering 'surgery' was nowhere in the lyrics! It was a long day, as they had to make the adjustments in their lab but I was not complaining at all!

Our other exciting news is that Caedmon can now roll over! Two days ago he was almost getting there and then he would start laughing hysterically and roll back to his back. This is video of that day. But yesterday, video still pending, he actually rolled over and over and over, all the way across his blanket! We're so proud of our big boy!

Original Blog Post: May 21, 2009- On The Home End

2011-05-04T14:52:00.001-05:00

Caedmon and I arrived home this afternoon. The powers that be decided to hold him in the hospital overnight for observation. We had prior warning that this might be so so it didn't come as a complete surprise though it wasn't exactly welcome news either.
The little patient is doing very well. He was and is a bit sore. Yesterday I couldn't move him without bringing out his pouty face and tears. Today is much less, thankfully. We are getting a lot more smiles and giggles.
This was our first hospital stay that we got to share with a roommate. Mercy! I'm sure many of you have experienced roommates in grownup hospitals and how difficult it is to get rest, multiply that times three when you are in a children's hospital. Seriously, you end up having one or more extra people in the room besides the patients. Our roommate was accompanied by Mom and Grandma. They entertained us with sonorous synchronized snoring in stereo through the night (that came to my mind about 3 this morning). I couldn't believe how well they could sleep! It was really quite impressive.
Caedmon woke up every two hours for comforting and, occasionally, food. Considering he has been sleeping through the night for more then two months now, it was a very crazy night for both of us. We awoke to the fearful and amazing sounds of our roommate's mom mimicking a very loud Elmo toy that was singing the alphabet song. Really, there's nothing quite like hearing Elmo singing at 6:30am, unless it is to hear someone trying to sing like Elmo.
We are so very grateful to be home. Caedmon got really excited when he saw my pull out his stroller and he started doing jumping jacks when I lifted him up to put him in, that's his way to sing, 'I'm so excited and I just can't hide it!'

Original Blog Post: May 20, 2009- Surgery Today

2011-05-04T14:51:00.001-05:00

^{Our theme song and verse:}
^{http://www.youtube.com/watch?v=gYx4Cv9CPFE}
^{Isaiah 40}
²⁸ Do you not know?
       Have you not heard?
       The LORD is the everlasting God,
       the Creator of the ends of the earth.
       He will not grow tired or weary,
       and his understanding no one can fathom.
²⁹ He gives strength to the weary
       and increases the power of the weak.
³⁰ Even youths grow tired and weary,
       and young men stumble and fall;
³¹ but those who hope in the LORD
       will renew their strength.
       They will soar on wings like eagles;
       they will run and not grow weary,
       they will walk and not be faint.

Original Blog Post: May 12, 2009- Oofta . . .

2011-05-04T14:50:00.001-05:00

Yesterday was our marathon-doctor day. Six hours of hurrying from one appointment to the next, waiting for our turn, short cat naps, and a lot of poking and prodding. Through it all our little champ smiled, cooed, giggled and squealed as he got more and more tired. What a trooper!

The results are in: his ventricles have not changed size so we have hit on the correct number on his shunt, at least for now, he's healthy and amazing so no more neurosurgical visits until November when he will have an MRI as a base-line for any future issues, he needs to see an eye doctor as a precaution for some issues SB kids can have, he gets to do another neumogram (sleep/breath test) but this time at home because of some breathing stuff he's been having off and on, and his circumcision/exploration is scheduled for May 20.

Needless to say, this is a down day in our household. Lots of naps, lots of storytime, a few videos, we all look a little bleary eyed.

Original Blog Post: May 5, 2009- More Surgery

2011-05-04T14:48:00.001-05:00

I've been holding off on this entry because I haven't been sure how to delicately share the news and ask for prayer without feeling like I'm mortifying Caedmon, even at this early age.

Caedmon went to visit the urologist who will do the circumcision for him. As the doctor was doing his check-up analysis he found that something else was amiss in that region. This will mean more surgery, which they can do at the same time they are doing the circumcision. There's a possibility that they will find some kind of defect that could lead to cancer if it is not taken care of early and quickly. Surgery has not been scheduled yet but will be next week sometime.

I feel very peaceful about this. I am not happy that we have to go in for another surgical round, not happy that Caedmon must undergo anesthesia AGAIN, but thankful that this will not be an overnight procedure and that they caught this now so that we can do everything at once and have it done. Had we done the circumcision earlier he would have had that surgery plus this one because they wait until the baby is six months to see if the defect will correct itself.

Original Blog Post: May 3, 2009- The Family That Runs Together

2011-05-04T14:47:00.001-05:00

We ran/walked the Bud Break 5K this beautiful spring morning at a local arboretum. Holy cow, it was the most severely hilly place I've ever run! Seriously, some of those hills were straight up, unbelievable! Caedmon was an awesome little coach. He got so excited to see all the people at the start of the race that he kept doing his gasp/squeal. It's adorable to hear! He talked, cooed and giggled the entire time. Damek ran/walked half the race and then climbed in the stroller toward the end. He got out for the last few hundred feet to say 'hi' to Caedmon and I and to run through the finish line with Daddy.
Getting ready for the start.

Mommy and Caedmon at the finish line.
Playing peek-a-boo waiting for Daddy and Damek.
There they are!

Original Blog Post: May 1, 2009- Moving Like He Should

2011-05-04T14:45:00.002-05:00

The school district's PT came by yesterday. She'll come every 6 weeks to check on Caedmon's progress, give us exercises to do and answer any concerns. It struck me again yesterday how grateful I am that God led us to Minnesota at this time. While many other states are getting rid of their early intervention programs because of budget shortfalls, Minnesota has maintained that they save more money by working with children at an early age and getting them the help they need before they get to school. What a blessing it is for the families! As a mom of a child with special needs I can attest to the fact that so many thoughts, doubts and fears go through my head on a daily basis: is that normal? is there something wrong? why did he just do that? To be able to have the support of professionals who work with babies and children all the time, I am able to maintain at a least a minimum level of sanity!

Kiirsten (isn't that a fantastic Minnesotan name?), the PT, checked his range of motion through the hips and head/neck, checked his incision areas on his ankles, control in sitting, tummy abilities, standing abilities, etc. The verdict is that he's doing awesome. He, again, registered as right at or ahead of the game in all areas. We will be working with him on exercises to get him comfortable again with taking weight through his legs, he lost that a bit during casting, as well as putting his feet flat on the floor so that when the time comes to stand he'll be comfortable with that.

Today Caedmon and Daddy get to meet with a doctor about getting the Biblical surgical procedure. We were told to put this off until the other things were stabilized since it isn't as important. So, next week sometime our poor little boy will go in again for the next 'surgery' (does it count as surgery?). Poor little guy. It seems like they could have just done it during one of the many times they had him out. Of course, maybe Daddy and Mommy couldn't have handled it very well! For those of you wondering if we even should worry about it, yes, unfortunately, it is highly recommended because Caedmon may yet, at some point in his life, have to catheterize so it is a must.

Next week Caedmon will be visited by his special ed teacher. She will be coming every six weeks also, to evaluate his social and developmental skills.
In two weeks we meet with neurosurgery to make sure his shunt is working properly and he has the right amount of fluid in his ventricles. We'll also make a stop at the Spina Bifida clinic where he will get his general check-ups with the pediatrician and urologist.

Sometimes, looking at all his appointments, I have feelings of being overwhelmed. I had gotten quite comfortable with being a bit of a hermit, locked away in my house, only going out when I wanted to. Now we are forced out, often, with our new baby. But when I get a little low, I remember what it was like just a few months ago, in and out of the hospital, and I'm so happy. Happy we get to all be together in the same house, eating meals, laughing, sharing life. I'm satisfied!

Original Blog Post: April 17, 2009- The End To Casts

2011-05-03T23:40:00.002-05:00

Caedmon had his casts removed today. It was so awesome to be able to see his feet and legs again. It really is such an odd barrier, having the casts on. For some reason, it makes me feel like I can't really be close to him, there's this wall between us. So, when the nurse took off all the layers of casting and I could see his pink and red skin (normal from the casting, not because of skin breakdown), touch him, rub lotion on him, cuddle him without the feeling of hard plaster between us, I was ecstatic!

And so was he. He was kicking his feet everywhere and I had to hold him down as the doctor fitted him for braces. We picked out some great rocketship ones with red, more for Damek then Caedmon since Caedmon doesn't really know what's happening anyway. Maybe also a little inspiration for Caedmon to reach for the stars.

It's very obvious that Caedmon has no movement below his knees. It was painful to watch. We haven't been faced with this limitation much since his legs have been hidden in casts for a while now and he hasn't been able to bend his knees. When the casts were removed he would kick out his legs and his feet would just swing loosely.

They can't give us any details as to how long he will have to have them. It could be his entire life, he might move into a different kind of brace, they just don't know. They'll have to wait and see how his feet adapt and move. We're praying for some good flexibility to begin. We have our own homework to help with that, exercises that need to be done to keep the success from the surgery going strong. So, for now, we just wait.

Original Blog Post: April 13, 2009- Communicating With The Boy

2011-05-03T23:39:00.001-05:00

Caedmon is getting more and more socially adept. His latest trick is blowing raspberries when he wants our attention. Of course, whenever we pull out the camera he quits doing it and tries to figure out what that thing is in front of Mommy or Daddy's face. So, the first video is Adam trying to get him to do it alone, not able to but getting some great happy talk and smiles and the second is tag-team raspberry blowing!

Original Blog Posts: April 11, 2009- Fun Times With The Boy

2011-05-03T23:38:00.001-05:00

Original Blog Post: April 10, 2009- Caedmon's Room

2011-05-03T23:37:00.001-05:00

Preparing for the first child is such a different world then preparing for any subsequent one! We have finally finished Caedmon's room after, well, a really long time. Here are some pictures of his newish space.

Original Blog Post: April 9, 2009- April In Minne-snow-ta

2011-05-03T23:35:00.003-05:00

Ahh, April . . . the smell of wet earth, the sound of songbirds, green leaves and flower buds popping out everywhere . . . maybe next week! This IS Minnesota after all, land of the frozen tundra, ice fishing, hockey, cold. Here's what we've gotten the first few weeks of April.
Our lake slowly thawing, you can see a little water appearing around the corner of the island.
All dressed for a snow walk.
Snowball fights!
Throwing snowballs in the water to see them melt.
Hiding behind trees to pop out and scare Mommy and Daddy, only the trees were never quite big enough!

Original Blog Post: March 28, 2009- Home And Doing Well

2011-05-03T23:34:00.001-05:00

We returned home from the hospital close to noon yesterday. The surgery went well and Caedmon is recovering. He's so tired from it all that he's still sleeping now, at 8:30 in the morning. The surgery was a little more complicated then Adam and I had anticipated. Not only were his tendons cut and loosened but the doctor needed to place a pin in each ankle to secure the feet into the correct position because they are so rigid. Then casts were put on. The casts and pins will, hopefully, come off in three weeks. Caedmon will then be fitted for braces. It's clear that Caedmon has very little feeling in his lower legs and feet. He has needed very little pain medication, just Tylenol, though the doctor wrote prescriptions for much stronger stuff. Again, Caedmon has taken all of this in stride. The nursing staff in the OR actually wrote a note on Caedmon's file that he is the happiest baby they've ever seen! He really is such a ray of sunshine!

Original Blog Post: March 25, 2009- Surgical Anxiety

2011-05-03T23:33:00.001-05:00

Tomorrow morning at 9:30 Caedmon will head back in to the OR. We are trying to allow God to take our anxiety and give us some peace. The last few times Caedmon has gone in for a surgical procedure we've ended up staying quite a while so when the doctor tells us it will only be overnight our feelings are saying, 'Oh, yeah, right! We'll be here two weeks!' Anyway, please keep us in your prayers.
Yesterday Caedmon had a check-up ultrasound/neurosurgery appointment and then a post-op appointment with the pediatrician. The ultrasound showed that his ventricles (the area in the brain that has fluid in it) was small. So, they dialed up his shunt to allow less fluid to flow out. We will have another check in six weeks to see if we've hit on the right number on the dial or if we need to toy again. Meanwhile, he is doing very well and growing and developing. Such a wonderful son!

Original Blog Post: March 24, 2009- Our Crazy Boys

2011-05-03T23:32:00.000-05:00

Original Blog Post: March 18, 2009- Good Reading For Hard Times

2011-05-03T23:31:00.001-05:00

I'd read Hind's Feet On High Places by Hannah Hurnard many, many years ago. I thought it was a good book, it had some pretty deep parts and I enjoyed it. But reading it now, after the past few months, it has taken on so much more meaning. This part really spoke to me:
'Here are the two guides which I promised,' said the Shepherd quietly. 'From now on until you are over the steep and difficult places, they will be your companions and helpers. . . As for their names . . . This,' said he, motioning toward the first of the silent figures, 'is named Sorrow. And the other is her twin sister, Suffering.'
Poor Much-Afraid! Her cheeks blanched and she began to tremble from head to foot. She felt so like fainting that she clung to the Shepherd for support.
'I can't go with them,' she gasped. 'I can't! I can't! O my Lord Shepherd, why do you do this to me? How can I travel in their company? It is more than I can bear. You tell me that the mountain way itself is so steep and difficult that I cannot climb it alone. Then why, oh, why, must you make Sorrow and Suffering my companions? Couldn't you have given Joy and Peace to go with me, to strengthen me and encourage me and help me on the difficult way? I never thought you would do this to me!' And she burst into tears.
A strange look passed over the Shepherd's face as he listened to this outburst, then looking at the veiled figures as he spoke, he answered very gently, 'Joy and Peace. Are those the companions you would choose for yourself? You remember your promise, to accept the helpers that I would give, because you believed that I would choose the very best possible guides for you. Will you still trust me, Much-Afraid? Will you go with them, or do you wish to turn back to the Valley, and to all your Fearing relatives?
Much-Afraid shuddered. The choice seemed terrible. Fear she knew only too well, but Sorrow and Suffering had always seemed to her the two most terrifying things which she could encounter. How could she go with them and abandon herself to their power and control? It was impossible. Then she looked at the Shepherd and suddenly knew she could not doubt him, could not possibly turn back from following him; that if she were unfit and unable to love anyone else in the world, yet in her trembling, miserable little heart, she did love him. Even if he asked the impossilbe, she could not refuse.
She looked at him piteously, then said, 'Do I wish to turn back? O Shepherd, to whom should I go? In all the world I have no one but you. Help me to follow you, even though it seems imposssible. Help me to trust you as much as I long to love you.'

Original Blog Post: March 14, 2009- The Amazing Race, Parent Style

2011-05-03T23:30:00.000-05:00

When travelling with children there are some important things to remember, you have no control over what will happen and choose laughter.
We had a lot of fun trekking with our boys across the midwest. It's a great way to spend time together, I'd forgotten how fun it can be getting stuck in a tiny space for several days.
It was a lot like our own Amazing Race:
'In this Detour, teams will choose which member will take the three year old with diarrhea into the rest stop and which will stay in the car with the three month old wiping off poop up his onsie to his ears. This will occur four times in a five hour drive so teams will have to be prompt, swift and not lose their humor. The one to lose their temper may be eliminated.'
'In this Roadblock, one team member will have to explain to the three year old who's been talking about it all day why the hotel has indeed chosen to close the pool for maintenance even though the team called them a week ago to make sure the pool would be open. It doesn't require much braun but a team that's exhausted may have trouble maneuvering around the land mines that are communication with a disappointed three year old.'
All in all, the boys were wonderful. There were two instances of everyone crying at once and those only lasted a few minutes before we got to our destination. We got to spend time with a new cousin and a few cousins, aunts, uncles, grandparents, and great-grandparents we had seen but didn't really remember. Damek was introduced to a trampoline, the Cave of the Winds and hotel continental breakfasts. He was also very taken by the wedding and told me this morning that Jesus was going to marry us tomorrow and have a big shindig with a great dance afterward. Caedmon was introduced to a dizzying array of people and dutifully smiled and laughed for all of them, even when he really just wanted to sleep. Our first night on the road after leaving Colorado he slept straight through until 5:30 and then, after eating, fell asleep again until 9. I think he was a little tired.
Yesterday, Caedmon received his last synagis shot. The nurse weighed him before giving the shot and we learned he'd gained 2 1/2 pounds in one month! He's now weighing in at 15 lbs 8 oz. He also, in the midst of screaming after the shot was given, tried valiantly to smile at the nurse and tell her he still loved her. What a warrior!

Original Blog Post: February 21, 2009- Surgery Is Rescheduled

2011-05-03T23:28:00.000-05:00

The orthopedist decided it would be better for everyone if Caedmon waited to have surgery until after our trip out west. This way we don't have to worry about infection or cast issues. So surgery is now March 26. We'll keep you posted!

Original Blog Post: February 16, 2009- Surgery Is Scheduled

2011-05-03T23:25:00.001-05:00

Caedmon, last Thursday, had his casts completely taken off. He doesn't know what to do with these amazingly light legs! He enjoys kickin' up his heals almost as much as Damek, especially when the tune is just right.
Caedmon will have surgery on February 27 to loosen the tendons in his feet and ankles so his feet will straighten. Because they are still quite rigid after six weeks of casting, the doctor will have to make a longer then usual incision, reattaching the tendon and Caedmon will have to spend the night at the hospital. Yippy, another stay at the hospital! Actually, I can say that jokingly because this is so much less stressful then having his little head and brain operated on and one night is really nothing.
Caedmon is doing so well. He actually slept for eight hours one night last week and is averaging around seven most nights before he needs to eat. He and Damek are as different as night and day with their infancies, it's really unbelievable. Caedmon falls asleep driving in a car, he can sleep anywhere even at church with people talking all around him, he can fall asleep just being held in my arms and not bounced all around for an hour, it's a miracle! We love it!
He's actually started to giggle a bit. I tried to capture it on video but he would have none of it. I did get his wonderful smile!