Owen's Story: Part 3

If you've missed the earlier parts of Owen's story, you can find them here: Part 1, Part 2. 

Angelman Syndrome

We headed to the geneticist in August of 2007, hoping to learn more about Prader-Willi and our chances of having more children with this syndrome.  After a complete physical and observation, the geneticist commented that she didn't think Owen had Prader-Willi.  She thought he had Angelman Syndrome, and wanted to run more complete genetic testing.

Owen gave up lots more blood, and a different lab did more specific testing.  The couple of weeks that we had to wait were horrible.  We thought we had closed the door on Angelman Syndrome, since the developmental pediatrician said it was definitely Prader-Willi.  Honestly, Prader-Willi looked a lot more appealing to us.

Kids with Prader-Willi may want to eat everything...but they can talk.  I had seen one of these kiddos while I taught in the high school self-contained classroom.  And he wasn't in my class.  He was learning a lot.  He was reading and writing.  He was delayed, but thriving.  He gave me hope.

The Internet can be a terrible place.  All the research I did on Angelman Syndrome gave me nightmares.  They dashed our hopes for our son.  Terrible, negative expectations.  Never talking.  Never walking.  Lifelong battles with seizures.  It was too much.  I began to shut down, knowing that this was the right diagnosis.

Owen was fascinating with water, even at that young age.  He had a beautiful smile--almost always seeming happy.  Those are both symptoms of Angelman Syndrome.  And the geneticist confirmed it.  His deletion was from the maternal 15th chromosome, not the paternal.  He definitely had Angelman Syndrome. 

Thankfully, she also told us that because Owen had the deletion version of this syndrome, Bryan and I did not have a high risk of having another Angel baby.  It was a random deletion, not an inherited form. (Yes--there is an inherited form of Angelman Syndrome.)

Bryan and I left that appointment with mixed feelings.  We felt like all of our dreams for our son had been dashed.  But, we also knew that the Lord had given us Owen for a reason.  It was only through our trust in Him that we began to put the pieces of our life and hopes back together.

About this time, Owen also had his g-tube and fundo surgery.  His recovery was hard.  When I saw him in recovery, I felt horrible.  I thought I'd made the biggest mistake of my life.  (Definitely wouldn't be the last time I'd feel this way in regards to Owen's health...) He looked awful.

Owen shortly after surgery. 

The new G-Tube...

Owen and me

Even in this pit of despair that we were in, the Lord was so gracious to us.  He walked with us every step of the way and guided a path.  We clung to Him and His promises.  And slowly the fog began to clear.

Owen began recovering.  With the tube feeds, he actually began gaining weight and strength.  He was finally getting himself to a sitting position and holding it.  We learned a new normal.  One that included hooking our baby up to a pump to eat.  Constantly listening for alarms, leaking tubes and food stuck on the fundo.  Driving all over the country for therapies.  We made it through the craziness, and settled into a routine.

At this point, we had moved to the farm.  Bryan was staying home with Jayme and Owen and going to school using his GI Bill. I was working in a resource room in the grade school I had gone to as a child.  Jayme was going to kindergarten in another district, with Grandma as her teacher.  Bryan dutifully drove Owen to Colville twice a week for therapy.  He went to Spokane once a week.  We had a therapist out to the house once a week.  Life was so busy.

We were thankful though.  It seemed like Owen had beaten at least one set of odds.  He didn't appear to have the seizure disorder that so many Angels struggle with.  Ha!  We just didn't know how to recognize a seizure when we saw one back then.  It's amazing what we can learn.  Since this is getting long, Owen's battle with seizures will be picked up in part 4.

For the rest of Owen's story, please click here: 1,2,3,4,5

Easy Cranberry Smoothies

We've had cranberry sauce coming out of our ears.  Well, not really.  But I did take a huge Costco bag of cranberries and turn it into sauce.  We'll call it Thanksgiving prep! But...it made way more than I was thinking it would! Especially since I didn't have a huge family crowd to share it with this time.

Since cranberry sauce only goes with a few meals, I've been searching the web and being creative.  We really enjoyed the apple cranberry crisp from this website. But, you can really only eat so much dessert.  At least you SHOULD only eat so much dessert.  I have a hard time with that concept!

So this morning I was looking at the cranberry sauce at the bottom of the fridge.  I knew it should be used up soon to avoid spoiling.  I scanned the shelves of our fridge and saw the half gallon of Maggie milk.

I had been giving Owen his meds in a cranberry yogurt, so I thought I'd try a smoothie.  I filled the blender halfway up with milk.  Then I dumped in about a cup of cranberry sauce.  For good measure, I threw in a banana that was banana bread worthy.  I added about five ice cubes and gave it a whirl.

Before blending...

 It was wonderful!  I really enjoyed the tang from the cranberries.  I think next time, I will definitely cut down the sugar in the sauce recipe.  It was sweet.  But, oh so good! I will be making this again.  I might even make too much cranberry sauce on purpose next time, just to get some more smoothie!

Cups of cranberry goodness for a couple of the kids.

 

Linked up to: Raising Arrows

Owen's Story: Part 2

This is the story of Owen--our angel here on Earth.  If you missed part one, you can find it here.

Misdiagnosis

We noticed that Owen spit up...a lot! Our whole house soon began to smell like acid. The doctor said it was acid reflux, and that we'd keep a close eye on Owen's weight to make sure it wasn't having a severe impact. 

At Owen's six month appointment, he weighed in just over ten pounds.  A few ounces less then he had at four months.  He was also delayed in motor skills.  He couldn't sit up or roll over.  The doctor, believing it was still severe acid reflux, referred us to a GI specialist in Spokane. 

I was told to put Owen on Nutramigen--a highly priced formula and stop nursing to get him to gain weight.  That formula stank.  Even worse than the acid.  But we spent $20 on each can and tried to get Owen to eat it.  When we mixed it with rice cereal and spooned it in he kept it down a little better.  We waited anxiously for our June appointment with the specialist. It was my first experience with a waiting list before being seen...definitely not my last!

In the meantime, we celebrated Owen's first birthday.  He had just learned to sit up, and could roll over most of the time.  We had a grand party for him, and he loved his cake!

At the appointment, Owen was prescribed a medicine for his reflux.  The GI specialist also told us that he believed something other than reflux was at the root of Owen's problems.  He recommended having Owen seen by the Developmental Pediatrician. 

We were able to get in to see that specialist in July.  While waiting, we completed our move back to Grouse Creek Farm.  We were living with my parents while fixing up the old family home across the road. 

The developmental pediatrician recommended genetic testing.  The blood work was drawn, and we began the waiting game.  When her office called and asked us to come in, we knew that they had found something.  Otherwise a simple phone call would have sufficed.  With heavy hearts, we headed into Spokane for that appointment, knowing that our lives would be changing.

Owen was diagnosed with a deletion on the 15th chromosome.  Prader-Willi was the diagnosis that the developmental pediatrician assigned.  I asked if it was possibly Angelman Syndrome, as they are sister syndromes, and were two of the conditions I had been researching while waiting. She assured me that it was Prader-Willi and referred us to the genetic specialist in town.

About this same time, Owen's weight was continuing to decline, and he was also diagnosed with failure to thrive.  We had a swallow study done, and found that he was aspirating liquids. A g-tube and fundoplication were recommended. 

In August, we headed into the geneticist's office ready to learn more about Prader-Willi and our chances of having other children with this disorder. Our path would be redirected once again by the findings of this specialist. 

For the rest of Owen's story, please click here: 1,2,3,4,5

Owen's Story: Part 1

Our Angel on Earth

Owen's story starts way back in 2005.  I had just graduated college, and starting my first teaching position in a high school severe/profound special education classroom.  My husband was in his final year of his Navy enlistment, and preparing to deploy on the USS Ronald Reagan.

Labor Day weekend presented Bryan and I with the opportunity to get together.  He was in Fallon, Nevada for training.  Jayme and I were in the middle of Washington.  He had time off.  I had time off.  We both got in cars and started driving.

We met in John Day, Oregon.  As luck would have it...all the hotels were booked solid.  Some kind of county fair or something.  Of course there aren't many towns in that neck of the woods. So we started trekking back towards Nevada, looking for a room.

Everyone was exhausted by the time we arrived, but we finally found a room in McDermit, NV.  The next day, we traveled a bit further to Winnemucca.  We enjoyed a fabulous weekend as a family--the final one we'd have before Bryan finished training and deployed.

At the end of the weekend, he headed back to Fallon.  Jayme and I headed back to Washington.  It was a long drive, but definitely worth it.

A few weeks later, we found out we were expecting for the second time.  We were excited!  The baby was due in early June, and Bryan's enlistment was up in July.

When my 20 week appointment came around, Bryan had been deployed for a couple of weeks.  We weren't going to peek, but I decided I wanted to know.  The ultrasound tech said boy, and I was super excited!  Since Bryan wasn't able to share in the joys of this pregnancy, I decided to go for a fancy 3D ultrasound appointment.  My mom went with me, and we enjoyed watching the baby move around for almost an hour.  The company made a great DVD, and I was able to mail it to Bryan.

We picked the name Wyatt Joseph--one we were going to use for Jayme had she been a boy.  Then my mom started singing an annoying song.  About Wyatt Earp urping a lot. Yeah...the name had to change!  So we started having long distance email communications about a new one.  That was fun.

Everything was looking good!  Fast forward a few months, and we are at the tail end of the school year.  Then the bomb threats started happening.  The high school I was at had three of them in a two week period.  Three very stressful incidents for me.  Even though I had been planning on working full time until baby came, I went down to half-days.

Bryan made it back stateside, and was in California waiting to start terminal leave in mid-June.  He surprised me by coming home on Memorial Day weekend.  I really wanted to have the baby when he was home, and even went in with some contractions on that Saturday.  I got sent home :(.  Bryan left.  I kept waiting. 

On May 30th, while walking around with a friend, I had my first major contractions.  After we finished, Jayme and I drove back home. Later that night, the contractions picked up a notch.  I got up and bounced on an exercise ball while playing on the web.  About 3 in the morning, I noticed they were growing more intense.  I decided to finally call my mom (living about 3 hours away...).  She convinced me to time them.  An hour or so later, I called her back with a report that they were definitely close, and called a friend to take me to the  hospital.

She came and drove me in and took Jayme back with her.  It was definitely labor!  My mom showed up just in time.  Just before 8 in the morning, Owen Elijah entered the world.  I was overjoyed!  I called Bryan and left him an excited message.

Owen seemed fine--he was 7 pounds, 5 ounces.  My doctor was a little concerned because he had a really weak cry and had trouble keeping his body temperature up.  A little time under the heater perked him up, and we all settled back to enjoy life with Owen.

Those first few months were a wonderful time--we had all the typical expectations for Owen.  That he would continue to grow and change and develop just like all babies.  What a surprise we had coming! 

To continue Owen's story, please click here: 1,2,3,4,5

Fermented Cabbage Experiment...aka Sauerkraut!

After reading Nourishing Traditions, I wanted to try my hand at fermented veggies.  I learned they were super healthy.  I learned they were simple to make.  I just was a bit scared of the process.

My parents bought me an awesome fermenting crock for Christmas last year.  It's been sitting on my counter since then, waiting for me to get brave.  I finally did!  The beautiful cabbages of fall were calling my name, and I knew it was time.

Check out this huge cabbage!

I consulted blogs and articles on the topic.  I was looking for open crock methods, since that's what I had.  I finally combined what I learned, and just jumped in.

I chopped my cabbage by hand since I don't have a food processor or mandolin.  A good washing took place and I started layering some good quality sea salt and cabbage in my crock.  Most recipes called for the cabbage to be pounded. 

Nothing in my kitchen looked suitable for pounding, so I washed my hands and arms and dug in.  I squished.  I squeezed.  I massaged.  The juices started flowing.  I let it sit for about half an hour.  Then I worked on it again.

By this time, the juices were covering the cabbage, so I moved on.  I stuck a kitchen plate over the cabbage and weighed it down with two quart jars full of water.  The brine rose above the plate, and all the cabbage stayed submerged.  I threw a kitchen towel over the top and forgot about it for a couple of weeks.

Today...it was time to be brave again.  I used a measuring cup to scoop out all of the liquid on top that had been exposed to air.  It was stinky!  In fact...I was planning on the kids helping me.  But when I saw the look on their face in response to the smell I changed my mind.  They enjoyed some extra play time and I worked with my sauerkraut. 

After I removed all the extra liquid, I stuck a knife in and pried the plate up.  My cabbage had turned really pale.  I picked up a piece and gave it a try.  Definitely salty.  I guess I went overboard with my layering.  Otherwise, it had a distinct tang.  I think it is something I will learn to enjoy.  In small portions. 

I scooped the sauerkraut out and stuck it into plastic containers for the fridge.  I need to  bring more jars up from the basement and wash them.  I feel better about long term food storage in glass than plastic.  Project for another day.


I'm super thankful to have made a successful batch.  It doesn't seem quite as scary now.  No weird molds blossomed or anything. 

More fermented veggies will definitely be in my future.  Do you have any recipes you recommend?

Study to Be Quiet

Isn't it interesting how God can bring certain verses into your life?  A few months ago, Jayme had to memorize 1 Thess. 4:11 for one of her classes.  I didn't give it much thought at the time.

Then,an elderly woman in our church who I consider to be a mentor, asked me my thoughts on the verse.  We had a good discussion, and I kind of forgot about it.

Until I realized I was a lazy learner, and began to study what the word of God says about studying.  This verse is one of three in the Bible that uses that word.

1 Thess. 4:11

"And that ye study to be quiet, and to do your own business, and to work with your own hands, as we commanded you;"

I read that, and reflected back to the other times I had recently been exposed to that verse.  I started pondering.  What was the Lord trying to tell me with this one?

Why in the world do we need to study to be quiet?  That just seems strange to me.  I started digging a little deeper.  According to Strong's, study means: to be fond of honor, to labor, to strive, to be eager and earnest to do something.

Quiet means: To keep still, to refrain from labor, meddlesomeness or speech, to cease, and to hold peace.

And I started thinking...about all the times when I think...I really shouldn't say that.  But I open my mouth anyways.  The whole--open mouth, insert foot syndrome?  Yeah...I really suffer from that! I struggle with just keeping my mouth shut.

I do need to study to be quiet.  I need to stop thinking of comebacks, and stop saying them.

This verse is sticking with me.  I definitely need to practice applying it.

What are your thoughts on this one?

Let It Snow!

The first snow of the season fell on us yesterday. I have to admit the kids were way more excited than Bryan or I....

Being Jeffrey's birthday, he got to choose the activity for family playtime.  Of course, he picked playing in the snow.  By that time, the snow had pretty much melted from our yard.  But, down by the creek it was still visible. We bundled up and headed down the road. 

Sydney loved the snow!

 We played.  Snowballs were made and thrown.  Cool foot patterns were created.  It was cold.  But oh so fun! 
 Hot chocolate was the perfect treat when we ventured back to the house. Sitting in front of the wood stove drinking cocoa was a great way to relax before quiet time.  The rosy cheeks slowly faded away as we drained our cups and watched the flames rise. 

I may not like the snow.  But I sure love spending time with my kids! They have the ability to warm me up even during the coldest activities.

Has any snow fallen on you yet this season?