Two Years

In 2 years, a little person can go from this:

 To this:

 Happy 2nd Birthday to the little girl who has shown us how fun the little things in life can be!  We love looking at life through your sweet and curious toddler eyes.

Calla Grace Hughes....

... loves to greet people everywhere we go and is generally pretty enthusiastic about life, with a contagious giggle

...loves to sing at the top of her lungs 

... requests "Jesus Loves Me" be sung to her almost every night

...knows all her letters and many numbers and the sounds of some of the letters

...plays very gently on our piano, while singing songs like "Baa baa black sheep" or "Where is pumpkin? (meaning thumbkin)"

...loves accessorizing and all things girlie

...likes to push her dolly stroller around the house - "where are you going, Calla?"  -"to work.  church. Daddy." or "Alaina's birthday party."

...is a big sister who just can't wait for her baby brother to grow up and play with her (evidenced by the time Mommy came into the room, and Cole had a plate sitting on his tummy with play things surrounding him)
...has the order reversed when she tries to blow a kiss 

... says adorable things like, "good morning, Mommy, sweet dreams?" and "I love you Cole, I love you Daddy, I love you fan!!!" and when asked her full name says, "Calla Shoes" 

...  is terrified of bubble baths - we tried it again this week, and one bubble rested on her finger, and she held it up to me crying, "napkin!!"  She was able to make it through the bath with the bubbles on one side of the tub and her on the other, like a showdown

... just this year since her last birthday, has learned to crawl, walk, run, climb, squat, kick, go up the step/ladder on a baby slide and slide down by herself, ride a toddler ride-on toy, reach for things from her tippy toes, and the big accomplishment of late is stepping down from a little step without holding on to anything.  Still working on jumping, which is the cutest thing ever to see her try to do

...loves balloons everywhere we go, except isn't too into them at her balloon birthday party

...still, months later, talks about her last trip to the zoo - "gumbrella (gorilla) spit"  and "wake up Kangyroo" and "pandy bore scratchin' back" and "eat bamboo."  

... finishes sentences like "Daddy is a ...." "Penguin!!" and "Mommy is a...." "Gumbrella!"  Thanks. :)

...knows 3 Bible verses

.... makes our lives and family so BRIGHT and JOYFUL!

 

 

Praise God for a Perfect Gift

Today is Mother's Day. 

I had planned on writing some sweet blog post about my sweet kids and everything that I had learned since first becoming a Mommy. 

And that is a whole lot. 

I was going to include some sweet things about my Mom and Mother-in-Law.

I will have to do that another day.  Because today, all I can think about is my sweet baby Cole. 

On April 20, I asked you to pray for him.  See the post here.  The very next day, we saw some arm lift that we had never seen before.  Thank you, God.  And then yesterday, he started bending his arm.  Praise God!  What a sweet Mother's Day present from the Lord.  In our internet research, we have read about compensatory movements, and our doctor warned us at Cole's first appointment that Cole's body can trick us into thinking that we see the right arm movements, but he is actually using other muscles.  So I emailed this video to Cole's doctor, and this is what he had to say:  "Very encouraging! That does look like good active shoulder and elbow motion."  Now men rarely use exclamation marks - my husband and I laugh at this all the time, because he will sometimes dictate messages to me, and I fill them with lots of "!!!!!!!!!!" and he makes me delete them!!!  I have learned more than I even know from this trial that we are going through, but I can tell you 2 things that I have learned to treasure: the bending of an arm and a well-timed exclamation point.

Please join with us in rejoicing the Lord's work in our son.  He probably still has a lot of therapy and hard work ahead of him, but we rejoice in this new development.   
James 1:17: "Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change."



Something we've never seen - a little arm lift!

You might not be able to tell why we are so excited, but around 37 seconds into this video, we think we see a new shoulder movement!  He very often rolls his right arm inward with his shoulder, with his arm against his body, as you can see in the first part of the video.  When he's really mad, we've seen it be pushed inward by that muscle so hard that his arm ends up on his chest.  But here, if you go really slow-mo, you can see it slightly go outward and then up - a different shoulder muscle!!  Well, so it appears to us - any OT or PT friends want to give us their opinion? :0)  Maybe it's just the same muscle getting stronger or his back muscles, but we never see him go outward with his arm, so even slight is great!!  Another thing he's been doing lately that is new is leaving his arm on his chest after we have put it there.  Cole's OT says that this shows that he isn't just sporadically tightening his tricep to pull his arm down like he used to, and he isn't just letting it flop to his side, but somehow is helping it to stay in place.  This video is taken the day after my last post.  Thank you for your prayers!!

Please pray for baby Cole!

Upper Brachial Plexus Palsy

Despite 7 years of working with infants and children with various diagnoses, before 2 months ago, I had never heard of this one.  But then my sweet baby boy was given this diagnosis. I have wanted to blog about this for a while, but having a newborn and a toddler means a pretty crazy-busy life!  My greatest desire in reading this blog post is for you to remember to pray for him.  Especially during this very critical timeframe, before he turns 3 months old.

What happened to his arm?

Cole was a big baby considering his small mama, I guess.  Three weeks early and 8 pounds 4 ounces (5 ounces smaller than his big sister, also 3 weeks early).  I guess I cook 'em big and quick!  The labor was pretty amazing compared to his big sis.  His head was delivered after maybe 15 minutes total of pushing, but then he stopped coming.  His shoulder was stuck against my pelvic bone, and his heart rate was going down sporadically.  It was an emergency situation.  Thankfully, the doctor got him out relatively quickly, but in the meantime, the nerves at the base of the neck that control his arm were injured.  When he was born he was overall just beat up and bruised, and the doctor immediately saw that his right arm hung limp at his side.

She ordered an x-ray to rule out that anything was broken.  Ruled out. We came to find out the the nerves at the base of his neck that control his arm were damaged.  Cole was given the diagnosis of Upper Brachial Plexus Palsy, where the nerves that control his bicep and shoulder are damaged, but his hand and wrist seem to work okay.  He is not able to "supinate" his arm, which is the movement used if you hold out your arm with palm down and then turn your palm facing up.  He is not able to lift his arm or bend his elbow.  We have to take care to not just let it hang there, but that it's positioned naturally, and cannot pull or tug on it.  He does have pain and makes it clear to us when it hurts.  We have an amazing OT friend who has helped us learn so much about nerves and has given us lots to do.  We also have an OT coming out every other week to check in and make sure we are following through with stretches, stimulation, and to monitor his progress.  We need to do these things to remind his brain that his arm is there, keep his joints flexible, and to stimulate the nerves.  Below is a picture of Cole at his first appointment with the specialist.  He is getting is neck and right arm stretched.  And looking cute!

What are we waiting for?

This whole journey with Cole so far has been a waiting game.  A time of growing in patience, perseverance, trusting in God, trusting in doctors, having hope.  A quote from the United Brachial Plexus Network: "When the nerve is severely injured, it has to regrow from the neck, down the arm.  Regeneration of nerves happen at a slow rate of one inch or three centimeters per month." (http://ubpn.org/index.php?option=com_content&view=article&id=120:obpi&catid=56:awareness&Itemid=101) He is now 2 months old.  So, from his neck about 2 inches downward means the healing would be at about the top of the shoulder right now.  In one month, healing should start to be evident in the bicep.  Cole's doctor told us that most babies who are born with this injury spontaneously heal.  This is our prayer for him! The doctor further explained that in many cases, if the healing happens by 3 months of age, then the lasting effects will be minimal to none.  If spontaneous healing happens later but by 6 months, then he will have moderate effects.  If spontaneous healing has not happened by 6 months, then he will have lasting effects that might be severe.  

This is why we are praying earnestly right now, that this final month before he turns 3 months, he will one day just bend his elbow and lift his arm.  If he does not, then our prayer is for healing by 6 months.  If there is no significant progress by 6 months, then Cole would be looking at nerve grafting surgery, where they take extra nerves from his calves and basically plug them into his spinal column and re-route the nerve signals.  But let's not think about that quite yet!!!  I tell myself that everyday.  

How can we pray for Cole?

• Pray that Cole will regain bicep function by 3 months of age.
• Pray that Cole would tolerate his exercises - he is a pretty fussy baby, and does not like to be messed with.
• Pray that we would be patient and trust in the Lord's plan for baby Cole's life and His plan for our family.
• Pray for wisdom - do we get a 2nd opinion, is there something wrong that none of us can see that God knows about?  Is there a certain therapy style that would be best for him that no one is telling us about?  We daily pray for God's guidance in these things.
• Pray that should there be no healing at the 3 month mark, his arm would heal by 6 months.  We just don't want surgery for our precious little boy!!

Thank you!!

Cole Darby Hughes

Something happened to my baby girl.  It happened in the blink of an eye.  All of a sudden, her feet are huge.  Her hands seem like monster hands.  And she is heavy!
  

 It's all about perspective - she suddenly has seemed to have grown, because we are now getting accustomed to tiny little newborn feet, hands, and what seems like negative weight in our arms.

 On February 19, 2011 at 7ish pm, we welcomed our sweet baby boy Cole Darby Hughes into the world.  He weighed 8 pounds 4 ounces and was 19 3/4 inches long.

Calla has been the primary subject of this blog for 21 months, and now it's time for her to share the throne!  She is now a Big Sister.
 
When she first met Cole, she looked at him with curiosity...

After a few minutes, she said, "Bye Bye, baby brother."  Since then, her affection toward him has grown.

 We got to bring Cole home 2 days after he was born.

Despite Calla's double ear infection and having had to endure separation from Mommy and Daddy for a couple of nights, she adjusted to her new baby brother pretty quickly.  She initially called him "Baby Coke," but now says "Cole" quite well.  She has tried to smush his face, give him chips, and shove the pacifier into his mouth.  She gives him lots of kisses and loves to play with his toys.

I have more to say about the last couple of weeks, but for now, enjoy some pictures of our sweet little guy.

Catching up: Trip to California

We were blessed to have a wonderful time visiting family for Thanksgiving and the week after.  Thinking we'd just miss Thanksgiving due to expensive fares, we were excited to find that flying on the actual holiday meant cheaper tickets.  So, we spent a long day traveling, but were rewarded with being with family for one of our favorite family days.  Our prayer was that Calla, being 18 months at this point, would do well on the airplane.  This was our last chance for her to fly free, so we didn't get her her own seat.  I was upset the night before when we found out that the airlines had to separate Darby and me due to not having enough air masks over the seats we chose.  They were able to seat us togetherish, with just an aisle between us.  It turned out to be a big blessing, because Calla was able to stand in the aisle more and cruise back and forth between us.  The flight was perfect (well, after she threw up). 

We spent Thanksgiving with the Hughes side of the family. The highlight of that day for me was meeting my nephew Tatum for the first time!! Also, seeing our dear friends Tim and Isabel after so long.  Calla had a very difficult time adjusting to being with such a big family, as well as being very tired and wanting to sleep.  She did play some with her cousins, though.

 

During the week, Calla spent a lot of time with her cousins Silas and Tatum, because they aren't in school yet.  It was so cute how Calla woke up one morning saying, "Silas?"  In the video below, Silas and Calla are feeding the fishies in Grandad and Grammy's pond.  

 

With the Hauptman side, we had a special Thanksgiving celebration on Friday.  Highlights from our visit with them was seeing our cousins who visited us.  My cousin Christie is pregnant, as well as my sister-in-law Shannon (for a few more days anyways!) and I.  

 

 The picture below is Calla with some of her cousins.  This is unfortunately how Calla looked for most of our trip to California.  Here, she's upset because we turned the tv off, but she was often like this just because someone talked to her or came too close.

 

Calla had a lot of fun at the park with her cousin Luc.  She hates to swing now for some reason, but likes to slide!

 

Luc was full of love and kisses for Calla.  So sweet!

 

The best part of being out in California was timing it just right to be there for the birth of my newest nephew, my brother's son Brayden.  This picture is Nana, Calla, and Luc awaiting Brayden.

Here he is!  Brayden Richard Hauptman, born December 3, 2010. 

After spending time with family at the hospital, we went to a very special early-Christmas party with the Hughes side of the family.  Darby's sister was so sweet after a crazy-busy month to also plan a party to celebrate Christmas with us, complete with activities like a family stroll to look at Christmas lights and a project for the family to hand-make Christmas decorations for our new home.  Sadly, I kept forgetting to take pictures! 

If you made it to the end of this post, then you get to see the absolute best part of the trip (for Calla and me, anyways!).  Calla was finally brave enough to try her hand at walking more than a random step or two.  We had the video camera close at hand, so here is one of her first efforts.  Go Calla, go!!!  I'm so proud of her! Sorry the video was turned to the side, not sure how to edit that on here.

Catching up: Family Photos

In November, we were able to get some great pictures taken by a professional photographer at Clear Creek Images.  This is the same photographer that took Calla's ladybug pictures in October.  Thought we would upload some of them for you to see!