No Right Click

Wednesday, October 15, 2014

One Year Ago Today...

One year ago today we caught a red eye flight to Eastern Europe to meet our babies for the first time, filled with disbelief (is it really here?), excitement, fear, and dread of the long flight ahead, wondering if our kids would be anything like we imagined (they weren't ;)), and praying they would be ours.    


Saturday, September 27, 2014

Grace in Her Smile

We sat bouncing on an exercise ball, her on my lap.  Giggles of glee came from her mouth as she closed her eyes and melted into me.  She always melts in my arms when she is happy, nuzzling her body against mine.

It was a sweet few moments being able to delight her little heart.

We worked on some exercises on her bed before nap and she laughed as she did them.  I couldn't help but think about what a joyful little girl she is and how many times I've taken away her joy.

How many times have I squelched that joyful spirit with my words and attitude too harsh?  How many days has she avoided making eye contact because I was impatient and angry yet again with her sensitive soul?  How many times have I torn her down instead of building her up with words of encouragement when we are working on making her body stronger?  How many times have I forgotten that everything is harder for her and assumed the worst of her?  How many days have I demanded, demanded, demanded her to work and neglected to snuggle and play?

    Photo credit: Jenn Keener

Each day asking forgiveness again and again.  It's midnight and she's curled up in my lap, nestled in close, as I rock her to sleep after another screaming fit, the calm after the storm, and I seek her forgiveness and the Lord's for my angry response.  I kiss the top of her head and whisper the truth both of our hearts need to hear, as her eyelids are heavy and she falls asleep...I will always love you.  Always, always, always.  There is nothing you can do to make me stop loving you.  There will never be a time when I don't love you.  No matter what you do.  No matter how mad you get at me.  No matter how much you push me away.  No matter how mad I get at you.  I will always love you.  Always, always, always.

Grace.  What our hearts need to hear.  I can't stop loving her the way He can't stop loving me.  I won't stop loving her because He won't stop loving me.  He forgives me again and again, and so I need to forgive her again and again, to show her grace.  I need to ask her forgiveness again and again, and I find grace there waiting.      

And when she smiles at me the next morning, I know that I am drinking more deeply of grace in these moments than she is.  Jesus, Grace Himself, tangible in the smile of this little one, who says with her smile yes, Mama, I forgive you, yes, Mama, I still love you.     








Thursday, September 25, 2014

Is She Walking?

 "Is she walking?"  We get this question a lot about Nora.  The short answer is no.  No, she is not walking...yet.  We don't know when she will walk.

Some kids with cerebral palsy never walk.  Some walk quickly.  Some are walking for four years before they no longer need a device assisting them, like a walker or gait trainer.  Some never walk without a walker or canes.

We, along with the doctors and therapists, see nothing that will hinder Nora from walking long-term, but it is going to take a while to get to that point.

Her gross motor skills are still very much that of a baby.  When babies are born with cerebral palsy, they (most of them) don't explore their bodies the same way other babies do.  They don't reach up in the air to look at their arms and move their hands.  They don't roll over or lift their heads up.  They don't kick their legs.  They need parents or early intervention therapists who will help them explore their bodies.  Nora never had anyone to push her to the next milestone or help her explore what her body can do.

In a lot of ways, we're starting from back at that point.  She can roll over, bear weight on her legs if she has something/someone to hold onto or a wall to lean against, kick her legs while laying, take some steps while supported, along with some other gross motor skills.  She can sit up for a little while if I sit her up.  She can reach for objects (she can reach across her body now!).  She can hold her own cup and hand me her cup when she is done and I ask her to hand it to me (Guys, she can hand me her cup!  We've been working on this for weeks and two days ago she started doing it on her own!  This is BIG for her.)

We are working and struggling to overcome anxiety and fear, laziness, learned helplessness, and self-entitlement that years of trauma and years of laying in a crib or stroller all day have led to and brought out in our little girl's heart.  Our girl would be content to just lay all day and have us do mostly everything for her.  Physical therapy sessions can be and most days are a battle.  Hard work is well...HARD.  And she doesn't want to do it.  She doesn't want to be pushed to the next level.  If I laid around for five and a half years, it would be awfully difficult for me to want to work after that.

Nora doesn't see the joy that's to come when she gains these new skills.  She doesn't know that the more she works, the easier these skills will become and the more freedom and control she will have over her life.  We push her to persevere because she has no desire to do it on her own.  We push through the tantrums and body flailing.  We make her work because we love her.

----------------------------------------------------------------------------------------------------------------

As for where Nora is at right now, the big goals right now are to

  1. Build neck strength and stability through keeping her head in neutral position 
  2. Build shoulder strength and stability 
Building upper body stability is the main goal.  Which means LOTS of belly time.

Then core strength (which she already has a decent amount of since we focused on core strength for so long).
Then leg strength and then mobility.  She will be gaining some leg strength, now, through her stander.

These things seem so simple to you and me, but to the body of a child with cerebral palsy, these stability exercises are strenuous and exhausting and do not come naturally.  We work to do the exercise below on a daily basis at home.

This is what Physical Therapy looks like:

Totally thrilled to be doing this ;)  
On her belly, elbows under her shoulders, hands open, head in neutral position- 
we work to hold this position for at least 20 min.
 

Sideline on her right elbow- weight on right elbow, try to keep head up, hold for 5-10 min and build over time



Sideline on her left elbow- the hardest one of all.  Try to hold for at least 5 minutes.  Work to hold head up.  

The first position on both elbows is getting pretty easy for Nora, but sideline is the difficult one-- especially on her left elbow.  Sideline on her left elbow feels to Nora's body what a marathon would feel like to our bodies.  It's ridiculously hard because that arm is the weakest and tightest part of her body.

We do some other work, like letting her explore what her body can do while she lays on an exercise ball and working on hands and knees crawling position (quad) with a small exercise ball under her belly, but those are not the main goals.  

----------------------------------------------------------------------------------------------------------------

For months before starting formal PT, we worked on core strength because isn't core strength huge?  Who would have thought neck and shoulder stability were just as critical? :)

"Look Ma, no hands!"  She experiments with no hands more and more. 
 Love seeing her confidence build! (Pic taken a few months ago)

Look at those legs holding onto the table!  She is using her hamstrings!! When Nora came home, she didn't even know her hamstrings existed.  If she sat on the edge of the table like this then, her legs would have just floated out in front of her.  She is gaining so much control over them.  It's so exciting watching her brain discover new things! 

God is redeeming Nora!  We are so thankful that He sustained her body all those years in the orphanage!  

Friday, September 19, 2014

Check Out This Girl's New Wheels!


This little one's GLOW-IN-THE-DARK wheelchair arrived, after ordering it back in April.  The wait was worth it because this girlie is overjoyed about her new chair!  Nora can see everything around her better, without the walls of the stroller blocking her view.  It also makes her practice holding her head up and sitting straight up, much to my delight.  And it helps Mommy and Daddy not feel so guilty about using Nora's handicap placard (we're still getting used to that one). ;) 



Nora's new stander also arrived at the same time as the wheelchair.  She is strapped into the stander, as you can see below, so the stander does some of the work for her.  But standing in it will help her build a little bit of muscle and build bone density to strengthen her bones from the lack of weight bearing for years (crawling can also build bone density, but she's not able to hold a hands and knees position yet).  


There are so many perks of having a stander!  Nora gets to see what the world is like from a new angle and get used to the feeling of standing.  One of my favorite things about it is that we can practice her occupational therapy (OT) skills.  When she is in her booster seat, she has to work hard to focus on sitting up, which makes it difficult to work on other skills at the same time.  The stander, on the other hand, is holding her body up for her, so she is free to focus on the fine motor tasks at hand, sometimes much to her dismay. ;)   


Below you can see how she is strapped in.  (She's not quite standing right in the pic (leaning too much on her left leg)).  Nora is wearing her new(ish) pink and purple Ankle Foot Orthotics (AFOs).  These keep her ankles in proper alignment when she stands, instead of her ankles pronating (or turning) inward.  When Nora stands without orthotics, her knees overextend backwards, which is bad because then her muscles aren't really doing any work.  Her joints are bearing all the weight when she overextends her knees.  Her amazing Orthotist made her AFOs in a way that forces her to bend her legs a tiny bit when she stands, eliminating her tendency to overextend the knees and allowing her muscles to do the work, instead of her joints.  Many kids have trouble getting used to AFOs, but Nora seemed to like them from the start, which was a relief! 


Hooray for building muscle and leg strength!  
We are thankful to God (and the insurance companies ;)) for providing these new tools to help Nora grow and enjoy everyday life!  



Sorry we've been MIA.  Life has been very full- many doctors appointments, therapies, some challenges, and lots of giggles from our giggliest little boy.  We are working to update more regularly, but please be patient with us. :)    







Monday, July 14, 2014

Our Week in Pictures


You should have seen the other guy...

Tickle Time

Sibbie Love

Music Time with Daddy

Splat Cat.  
This is what happens when we get home from helping Daddy invite students to Christian fellowship on campus and then go out to eat, bumping back nap time. 



Wednesday, July 9, 2014

Forget Not All His Benefits

On the way home from the hospital


Many have asked us how Noah is doing.  The short answer is he is doing great!  We arrived home from the hospital about a week and a half ago.  Time has flown by!  The little man had a much better transition home than we anticipated.  See?


Overall, he is doing really well and doesn't seem to be in any pain.  He has had a slight fever, which is normal post-surgery, but no need to worry unless his temp goes up higher.  He has also struggled with some difficulty sleeping and clinginess, but as long as he's on one of our laps, he's a happy boy.  Noah has been a lot more cheerful than we expected and blessed us with lots of laughs, smiles, and all around silliness. 

For two weeks he was not allowed to lay on his stomach to protect the healing incision on his chest.  Needless to say, his body is a bit weaker than before, so we are working on rebuilding those arm, leg, and core muscles and getting him crawling more regularly again.  

Want to hear more about how crazy kind and gracious God is?  
We saw Noah's cardiologist for a follow-up appointment on Friday.  And once again, his cardiologist was amazed at his progress!  Remember how we asked you to continue to pray for the right ventricle in his heart to work more efficiently?  Well, it is working more efficiently now!  The issue was that that ventricle was under so much pressure for years from his pulmonary artery being banded.  His right ventricle was working overtime for five years.  But Noah's echo-cardiogram on Friday showed that the pressure in that ventricle is almost half of what it was when he was in the hospital.  I'm no cardiologist and don't know what unit of measurement it is, but his cardiologist said when he was in the hospital the pressure in the right ventricle was 100 and now it is already down to 55.  That's great news and another answer to prayer!     

Here is some other good news:
  • There is no more swelling in Noah's body from the surgery
  • His oxygen levels are normal
  • His blood pressure continues to stay at a good level
  • He does not need two of his heart medications anymore.  No more waking him up in the middle of nap time each day!  No more planning meals around medicine!  Woohoo!
  • The time in the hospital actually helped Noah's bond with us grow, rather than hindering it.  We'll share more about this soon :)
  • Nora did well through all the transitions.  She had a rough first two days home (which is her normal pattern), but is back to her normal happy, goofy,...feisty...self.  We have some long overdue, encouraging updates to share about her progress soon. 


Thank you again for all of your support and prayers on our family's behalf!  Please continue to pray for complete healing in Noah's heart.  It may take years for his heart to work out the kinks...there is actually a kink in his pulmonary artery from being banded for so long (think like a kink in a hose), so it will take a little while for it to expand even more and get the pressure in that right ventricle down completely.  We are also attempting to wean him off of his diuretic medicine (at the direction of his cardiologist), so we would appreciate prayers.  One prayer is that he can successfully come off that med.  The other prayer is for wisdom to see the signs if he cannot come off of it.  Basically if his body needs that medicine and we take him off of it, fluid will build up around his heart and he will experience heart failure.  That is why we need the wisdom to be able to notice if his body is retaining fluid or not once we wean him off of it.  Thank you for praying! 

Lastly, please praise the Lord with us.  He is good.  Always.  We are still thrilled and amazed and so so thankful that we get to keep our little guy!  What a gift!

1   Bless the Lord, O my soul,
and all that is within me,
bless his holy name!
Bless the Lord, O my soul,
and forget not all his benefits,
who forgives all your iniquity,
who heals all your diseases,
who redeems your life from the pit,
who crowns you with steadfast love and mercy,
who satisfies you with good
so that your youth is renewed like the eagle's.
Psalm 103







Saturday, June 28, 2014

Answered Prayers

This son of ours has a way of surprising everyone.  It happened in December when he went into heart failure and the doctors thought we would have to make a decision about surgery right away.  Then Noah went ahead and surprised everyone when his heart stabilized very quickly, and we were able to postpone surgery until now.

This time around the doctors and nurses cannot believe he wasn't sicker when he came out of surgery.  They keep telling us how they expected him to be in bad shape afterward since it was such a complicated procedure.  His cardiologist couldn't believe how quickly he moved out of the ICU and into the regular Cardiac Care Unit.  We are surprised by how quickly he is recovering, too.  Heck, we're even blown away that the whole procedure was successful in the first place- especially since the surgeon talked to us right beforehand and was hesitant about it working.  (Of course, it will take certain parts of his heart longer to figure out how to work well again, but that will happen, Lord willing, over the next few months).

This faithful God of ours is the One who is really doing the surprising, the One bringing forth healing in our little man.  We are so in awe.  We are so humbled.  And we are so thankful for your prayers.  


So many answered prayers thus far!

  • You prayed with us for Noah's heartbeat to find a rhythm and as of yesterday his heartbeat is more regular!  
  • You prayed with us for the swelling to go down in his body and it has.  He still has a little extra to get rid of, but he looks worlds better.  God answered this prayer a little differently than expected.  Yesterday his echo showed fluid around his lungs (which is common after heart surgery).  However that turned out to be a good thing.  For the couple of days before that, I asked a few nurses to increase his diuretic because I could tell his body needed it badly, but each of them just wanted to wait it out, telling me that it's normal for kids to be swollen.  So, when they saw fluid in his lungs, they finally upped the dosage, which helped his body to release a lot of the fluid that was making him swollen.  Yesterday he had four pounds of extra weight on his body just from fluid retention!  So, I'm strangely thankful for fluid in his lungs that led to his whole body losing fluid because of the increased diuretics.
  • You prayed with us that Noah would breathe well without his oxygen tube.  Today he hasn't used it at all!  He only needed it a minimal amount of time overnight last night but hasn't needed it today, even for napping.  The doctors were worried about his levels dropping when he sleeps, but so far now they've been good even while he sleeps.  Getting rid of the extra fluid and the fluid around his lungs has helped him be able to breathe better.


Right now, the doctors are guessing we will go home tomorrow as long as everything continues to look good today.  That is way sooner than any of us expected.  We anticipated being here for 3 weeks, or maybe 10-12 days in the best case scenario.

Noah looks really good today!  We're continuing to see steady improvement.  We got to play and go for a wagon ride in between naps. :)

I could snuggle and sing to him all day when this is the response he gives me. :)



In an interesting turn of events, this sweet little girl below caught a stomach bug from the hospital and ended up vomiting all over Noah's hospital room last evening.  


Because she was very lethargic and not very responsive in between and after vomiting, we took her downstairs to the ER just to be safe.  While I was walking her back, the nurse mentioned the horrible timing of it all and what a hard situation it was to have one kiddo just have heart surgery and the other get a stomach bug while visiting.  But you know what?  It didn't feel that hard or horrible (of course, we felt lots of compassion for Nora though).  Seriously, we're just so overwhelmed that God would be so incredibly gracious in bringing Noah through the surgery safely, allowing the surgeon to complete the whole procedure as planned, and making Noah a rockstar at recovering, that the situation didn't feel very stressful.  Our biggest worry was whether or not Hubs should take Nora home to rest in her own bed or to stay with friends in the area again.  

After she got some anti-nausea meds and drank enough fluids to prevent dehydration, the ER released her, and her awesome and incredibly handsome Daddy drove her all the way home, so that she could be comfortable while she recovers.  Thankfully, she is back to her perky self today and soaking up lots of quality time with Daddy in this rare opportunity to have him all to herself. ;)  

Thanks again for all your prayers, friends!!

We would love your continued prayers:
  • That Noah's oxygen levels would continue to be good
  • That the rest of the fluid would leave his lungs and body
  • That his heart continues to figure itself out and that his right ventricle, especially, will work more and more efficiently
  • That Nora would be comfortable with all the changes this week.  Going home makes four places she has slept in one week!  She is a trooper :)