Minnie Mouse and the Fussy-Breathing Dragon

Calla and Cole got all costumed up for our church's Reformation Day celebration.  Calla wanted to be Minnie Mouse, and Cole wanted to be something fussy.  :)  

Calla with her friend Laney, who is the world's cutest Little Red Riding Hood

 

Photo Fun

Got my hands on a nice camera and took these pictures at a park outside of our subdivision.  It was almost a month ago, but I haven't made myself just sit down and share them!  There are more that haven't been edited, but this is a lengthy "sneak peak!"  

On Passing the Cookie Test

"...everyone

would pass more tests

if they involved cookies."

~Scott Lang, deep thinker and beloved Uncle

Today was a critical 7-month appointment with Dr. Ratner, Cole's Brachial Plexus Specialist. Would he pass the Cookie Test? Or would he need surgery to repair his nerves?  As his parents, we hovered around the tension of really wanting surgery if it would help his prognosis, but not wanting our fussy sweet baby to have to go through all that is involved with nerve surgery.  Our prayers leading up to today involved placing the situation in the all-wise hands of our faithful, sovereign, loving God.  We especially prayed for Dr.  Ratner, that the Lord would direct his mind to recommend the exact course that Cole would need.  At this point, only God knows the exact nerve damage.  Dr. Ratner makes his recommendations based on observation of Cole's progress throughout the months. 

In the end, it all comes down to...

                     The Cookie Test...

                             It beat him last time, but he won't let it beat him again...

                                       

Cole is in the zone, he has his eye on the prize, he is staring down that cookie test.... 

                ... he is taken aback... a moment of doubt... I have to do what?  Are you serious?  You do realize that I don't actually eat cookies yet...

BAM!!  Take THAT, Cookie Test!!!

Based on Cole putting that cookie in his mouth, Dr. Ratner sees no need for nerve intervention, and does not need to see him back until he turns one.  There are still some things Cole needs to do, like supinate and externally rotate his arm, but those are the last things to usually come.  There is always the possibility that Cole could need surgery down the road, but for now, he is in the clear. 

Thank you, God!  He has heard the many prayers given on Cole's behalf and spared our baby a lot of pain! 

But let us just add this.  God is good.  Always.  God's goodness is not dependent on Cole passing or not passing the Cookie Test.  Though there are sufferings and trials in this world, God's goodness has never been in question for us, because we believe the Bible, which tells us that "God works all things together for good, for those who love Him," and "goodness and mercy shall follow me all the days of my life." 

"He who did not spare His own Son, but gave Him up for us all, how will He not with Him graciously give us all things?"

Rom 8:32

God is good! 

6 Months, Much Anticipated

6 Months

~

26.75 inches

16 pounds, 4 ounces

~

Rolling and Rolling

Cooing

Tripod Sitting Sitting Up

Hungry, but Not On Solids (Yet)

Sleeping through the Night (Yay)

~

Bending Arm

Reaching for Toys

Still Trying to Pass the Cookie Test

~

Little Guy

Fussy

Bay-Cole  Be-Cole (changed due to family protest of the husbandly kind)

Happy Half-Birthday to sweet little Baby Cole!  We have anticipated Cole turning 6-months since about 6 weeks after he was born.  His doctor told us that would be the age by which we would see if he passed the Cookie Test, which is the test typically used to indicate a need (or lack of need) for surgery.  For babies with Upper Brachial Plexus Palsy, the doctors tend to wait 6 months for elbow bending, and if they can bring something (like a cookie) to their mouths in a natural way, they probably won't need surgery right now.  You can check out our last post to read our prayer and hopes for that visit.  Many of you have asked us for an update, sorry to make you wait so long!  

So no, Cole did not pass the Cookie Test.  Though he can sort of bring his hand to his mouth when sitting up, he does it in an unnatural and probably compensatory way (using the shoulder too much).  Cole's doctor earned our trust yet again, in that without us even saying what our hopes were, he vocalized them as his recommended course of action.

 ~Wait~

More waiting.  This has been what we have been doing for the past 6 months and are thankful to continue to do!  The doctor agrees with us that since Cole is continuing to make progress on his own and with therapy, let's wait a couple more months to see if he can pass that Cookie Test.  If he starts plateauing, or isn't passing that test, then we will have a conversation about surgical options.  

Thank you so much for praying and thinking about our Little Guy.  He is a gift from God, and so is the extra time we can wait!

Time to Pray!

Please say a prayer for our appointment at the Brachial Plexus Clinic tomorrow (Friday) afternoon.  Cole is a week away from turning 6 months, so this might be a big surgery-determining appointment for him.  Then again, they might give him until one more appointment to pass the Cookie Test.  That's what I'm hoping for, because as of today, he is not able to bring something (such as a big yummy chocolate chip cookie) to his mouth from the sitting position.  But, he is making progress all the time!  So, maybe if they give him a couple more weeks?  Either way, we are so thankful for each and every prayer lifted up to God for Cole.  Cole bends his arm regularly now, plays with toys, puts his hand in his mouth when reclined.  He can touch his eyes and reach straight out for toys (when reclined).  I just pray for Dr. Ratner (and us) to have wisdom to make the best decision for Cole's little (chubby) body.  Only God knows exactly what kind of damage is there and what Cole needs, and if he needs surgery then I want him to get it!  Thanks everyone!

For those of you dying to see new pictures of my kids, here are a few:

 

And if you made it to the end, a fun video of my kids playing together!

And the winner is...

#8, Audrey Jones! 

Hope sweet little Laney loves her new diapers!

Seventh Generation Diapers Review & Giveaway!

 

Have you tried Seventh Generation diapers before?  I have seen them in stores before, but finally just now tried them for Calla this week and really liked them!  I was sent a package for the purpose of having Calla try them out, give my opinion in this review, and then give my readers and friends a chance at winning a pack to try on their sweet kiddo!  So, I'll give my review first, then giveaway details at the end of this post.

What's Different about these Diapers?

Seventh Generation Free & Clear Diapers are different from other brands, because they are free of chlorine, fragrances, latex and petroleum based lotions.  The company makes efforts to keep them thinner to reduce landfill waste, as well as the packaging being smaller to reduce waste.  In their efforts to protect the environment, they ensure than no chlorine is released into the environment in the making and processing of the diapers. 

My Experience

When I received my package and opened them up, the first thing I noticed (and loved) was that they are a simple off-white color (Calla calls them "khaki") with no characters or designs.  While this might be a silly observation, I tend to be a little frustrated by Calla's character-loud diapers that she wears underneath her church dresses!  I love that it is neutral and coordinates with her outfits.  Okay, aside from that, I was surprised at how well they fit Calla.  They have very sturdy straps that do not tear when you pull on them, they have a thin feel, and good texture.  We experienced no leaks, and their absorbency was great for Calla's needs.  I really did like that there were no chemicals or fragrances that might possibly be on her skin.  Calla is not prone to rashes, but her baby brother is, so I could see these diapers being very helpful for his sensitive skin!  The only negative thing I can think of at all is the price compared to cheaper brands.  I tend to buy whatever diaper I have  a coupon for.  However, I do see the brand's benefits as worth a little extra money, especially if they help keep unneeded chemicals off of baby's skin.  I do appreciate that I often see coupons for Seventh Generation products, and now I will be looking out for coupons and buying these if I can!

Some Helpful Links

• Seventh Generation on Facebook: http://on.fb.me/SVGDiaperFbook
• Seventh Generation on Twitter: http://bit.ly/SVGDiaperTwitter
• Seventh Generation Free & Clear diapers on SeventhGeneration.com: http://bit.ly/SCGDiapers
• For information about the whitening process: http://bit.ly/TCFProcess
• For information about the role of pigments in diapers: http://bit.ly/DiaperPigments

A Coupon for You - $2 Off

Seventh Generation Free & Clear diapers coupon: http://bit.ly/seventhgendcoupon

 

The Giveaway

Seventh Generation wants one of my readers to try these diapers out!  They will be providing the winner with 1 package of Free & Clear diapers mailed to your home.  Size options are 2, 4, & 5.  

How to Enter (1 entry per option below, do one or all, you pick.  Odds of winning go up the more entries you have):

1) Leave a comment telling me what you think about Seventh Generation Free & Clear Diapers or Eco-Conscious baby products in general.

2) Visit this link: http://bit.ly/SCGDiapers to read about Seventh Generation Free & Clear Diapers, and leave a comment telling me something you learned.

3) Become a fan of Darby Hughes Music on Facebook and leave a comment saying you did or comment that you are already a fan.  (Hey, why not do a shameless plug of my husband in my first giveaway?)

So you have 3 entries available to you. Entries will be accepted through Tuesday, July 12 at 12:00 pm Eastern Time. Winner will be announced on the blog and e-mailed.  Winner must respond to my e-mail in 48 hours, or a new winner will be chosen.  Good luck!!

*Disclosure:  My free diaper pack, the diaper giveaway, coupon links, and information were all provided by Seventh Generation through MyBlogSpark.

Happy 4th of July

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.