Damek's First Christmas Program

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

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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'

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

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

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

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

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

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

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

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!