No Right Click

Saturday, April 5, 2014

To the Woman Who Thinks My Hands are Full

I saw you watching us for a while as you sat across from us in that waiting room with a serious expression on your face, while I juggled one child in a carrier and the other in a stroller.  You looked unhappy or uncomfortable (and I can totally understand either of those responses).  You finally smiled after we talked to each other.  And then you told me that I must have my hands full.

I could have given you some cheesy line about how my hands are full but so is my heart.  But I didn't.  I told you the truth.  I told you that we adopted these two kiddos and that the first few weeks home were really hard, but that we've found our groove now and our days are pretty smooth.  I told you that although we certainly have hard moments, my kids are really good kids.  And then you looked at me quizzically, probably questioning in your mind if it was true.  I guess I could have given you a list of all of the doctors and store employees who are so amazed at how well the kids do when we are out and how well they listen, but I don't think that would have done it justice.  I don't think that was the point.  

I think you doubted there could possibly be easy days with my little girl, that most days could be easy.  You saw a child with special needs.  What you don't know is that she has cerebral palsy.  That her medical records say she was born premature around 21 weeks.  That she had a massive brain hemorrhage when she was born.  That she was in the NICU for six months after her birth fighting for her life.  That she was fighting for her life all alone for those six months...a one pound, one ounce baby struggling to survive all on her own, with only the Lord fighting for her.  And she did survive.  But that she spent the next five years of her life in an orphanage where no one nurtured her or taught her or helped her talk or walk or sit up.

Where you see a seemingly awkward, very delayed little girl, I see God's grace.  I see a miracle.  A miracle of a girl who never should have survived after her super early birth.  A miracle of a little girl trusting her new parents after experiencing so much hurt.  A miracle of a little girl just discovering life and coming alive.



Most of the time, I don't see her special needs.  I just see my daughter.  I see a loud and silly little girl who thrives on snuggles and lots of attention.  I see a girl whose happy place is Mommy and Daddy's arms.  I see a fighter.  I see a girl who works extra hard every day to do the things I take for granted, like sitting up.  I see a girl with a sensitive heart and a lot of hurt to unravel and heal.  I see a girl who surprises us everyday by how quickly she learns new things.  I see a girl who is being taught to use her spunk and tenacity for good.      

She was certainly loud in that waiting room.  And while it may have looked like I had my hands full working to quiet down her silly giggles (so as not to disturb you and the others around us in the quiet waiting room), wiping the drool off her mouth when she blew raspberries, and stopping her from rocking in her stroller (a new trick she just discovered while we were waiting there), I was actually really amazed that she was laughing genuinely and enjoying this new place. 

You see, a couple of months ago, she never would have been comfortable in that doctor's office.  She would have let out helpless little whines, ground her teeth, and been much quieter in her overwhelmed state.  And although she would have looked "behaved" and maybe even "normal" on the outside a few months ago, she really would have been a scared, overwhelmed mess on the inside.  That day you sat across from us was a victory.  That day showed how far she has come in four months and how much more she trusts her Mommy and Daddy.

I wish you could know her and see that her special needs do not define her.  They are a part of who she is, but they are not all that she is.  I wish you could see the girl I see.  I wish you could see the miracle that she is and the joy she brings to our lives.    

Friday, April 4, 2014

We Have Two Play-Doh Eaters

The kids had their first experience with Playdoh on Wednesday night. We try to incorporate some sensory activities, like playing with Playdoh, into their week because sensory play helps kids develop and engage their brains.      

Most of the time, unless I was helping him poke and squeeze the Play-Doh, Noah did not know what to do with it and just sat there.  He is still figuring out how to engage the world around him, especially when he has to use his hands.  He moved the Play-Doh up and down with his hand the same repetitive way he plays with toys.  Oh, and eat it.  He did that, too. ;)  But, he was did not have an adverse reaction to touching the Play-Doh.  He did not mind the texture.  He just was not sure what to do with this new thing that Mommy kept telling him not to eat.

One of the most encouraging things was that Noah did not hit himself at all while playing with the Play-Doh.  In the past, he would have hit himself to deal with the new sensations he was feeling- even if they were enjoyable ones.  But while playing with the Play-Doh, he was okay with the new things his hands were feeling.  This boy has come a long way! :)    




His sister, on the other hand, went a little crazy with it and was so excited to play with Play-Doh (which totally surprised us!  This is the first sensory play she seemed to love.).  Nora squeezed it, shook it, waved it up and down...and ate it. ;)  See that blue mouth?  This girl is so funny!  She is picky about food, but consistently kept trying to eat Play-Doh.  





It is so much fun to watch their little personalities come out more and more, and see how they will respond to new experiences!

Wednesday, April 2, 2014

Check Out These Skills!

When you have spent five and a half years growing up in an orphanage with little to no stimulation, progress comes slowly.  The most critical years for development are gone, but you were never taught or nurtured during those critical years, leaving your brain way behind in development.  Add in the trauma of abandonment and neglect and it makes for one damaged brain and one hurting heart.

The brain does not heal overnight.  Hearts do not heal overnight.

And so, we get excited about every little bit of progress our kids make.  We celebrate with them and for them with each little step of growth.  God has already done deep healing in their hearts.  The emotional healing is happening more quickly than we anticipated, but other areas of growth tend to progress more slowly.

But the kids are learning, and we are so excited about it!  Check out their new skills:

Working on drinking out of a sippy cup...sort of.  Mostly, she just lets the milk drip into her mouth and then swallows when it does. ;)  In the near future, we will work on transitioning her with a cup with a soft spout instead of a hard spout.

Sitting in a booster seat, working her trunk (core of her body). 
 It doesn't seem like a big deal, but for Nora this takes a lot of work and focus, because her trunk is very weak with low muscle tone from her CP.

She is working on sitting up in the booster seat for 20-45 minutes each day and handling it like the champ she is.

Cheating ;)  Someone discovered she could lean against the back of the chair for extra support.

Drinking out of a straw with his new sippy cup.  It took a little bit of time to teach Noah, but he mastered it the first day we tried and has only gotten faster at drinking through a straw.  Hooray for oral skills!
  
He's so darn cute with his lips puckered.  I can't handle it. ;)

Technically, this one is old news...a few months old.  Noah was put on a handful of meds after his heart failure.  Most are for his heart and the pill is for his thyroid.  These meds are sustaining his heart, but in the beginning he would spit them out...which put a lot of fear in this Mama's heart.  Did I mention they are sustaining his heart, as in he'll have heart failure again if he doesn't take them?  

We mixed the meds in bites of food to help him take them, but one of the heart meds has to be taken alone, so we still had to deal with the issue of him spitting out the medicine.  Well, one day Noah just decided he likes his medicine.  Seriously.  He started taking them well, and now we give them all to him straight with no food mixed in.  Also, he can swallow the pill and we don't have to crush it up, mix it with water, and put it in a syringe anymore.  This boy laughs when it's time to take his medicine (which is multiple times a day).  That's how much he loves them.  What a relief to us!  We are so in awe of the Lord's grace in helping Noah enjoy his medicine.  It seems like such a little thing, but when you are worried for your child's life it feels much bigger. 

Noah is also learning how to stack blocks.  We do a lot of hand over hand work to teach him new fine motor skills, but he does not quite understand that he can do these things himself.  He will reach for our hands to put on his hands and do for him.  But just this week, he started doing some things on his own...well, kind of.  He needs my hand on his arm.  But if my hand is on his arm (and he thinks I'm helping him, when really I'm only holding it there lightly and he is doing all the work ;)), he will stack foam blocks now!  Before he would not move his hand unless I was guiding it directly/moving it for him.  Now he moves his hand over to the tower and puts the block on top!  This is huge for him!  We have been working on fine motor skills day after day, and Noah is now beginning to understand and try to do new things. 

In other news, Nora decided it was a good time to grow an inch in two weeks!

Please praise God with us in all that He is doing in the lives of our little ones!  :) 
It is SO fun being their parents!  They amaze us every day! 


Remember sweet Lydia.  She needs a Mama and Daddy to teach her new skills, too.  She needs someone to nurture her.  She will bless you with the best giggles!  




  



  

Tuesday, March 25, 2014

Happy Cerebral Palsy Awareness Day! :)

Today is National Cerebral Palsy Awareness Day.  Before adopting Nora I didn't know much about CP.  Check out Love That Max's blog post to learn more about CP:
http://www.lovethatmax.com/2014/03/what-it-means-to-have-cerebral-palsy.html?m=0

We are very thankful for our little cutie pie with CP.


And you know what?  She has been such a blessing to our family!  I was scared to take on a child who had CP, but in reality her CP is not scary at all anymore.  

When we were in Eastern Europe, we met this adorable, sweet girl in our kids' groupa who also has cerebral palsy.  Lydia is the sweetest child.  For reals.  All we had to do was talk to her or tickle her lightly, and she would giggle away.  It was so rewarding to see her face light up every time!  She seems easy going and joyful.  

She is six-years-old (but about the size of a four year old) and needs the love of a family to thrive.  She will seriously bring SO much JOY to whoever gets the privilege of calling her "daughter."  We are so very much in love with this precious girl.     


Please join me in praying for a family for this sweetheart.  It breaks our hearts to think of her being left behind in the orphanage.  She is the only child left in her groupa who is non-mobile, so day after day she sits all alone in her stroller in the middle of the room.  No one is talking to her or tickling her or making her giggle now.

Please consider bringing Lydia into your family.  It's a short process, typically seven months from start to finish.  I cannot tell you enough about how she will bless your socks off.  She was such a joy to see each day we visited our children.        

Please consider giving to her Reece's Rainbow account.  The family that commits to her will receive that money toward her adoption.  The more money in her account, the more courage you are giving a family to step forward.  Click on the link below to give on her behalf.  Any amount is helpful, no matter how large or small.    

Read more about Lydia and contribute to her grant fund here on Reece's Rainbow:  http://reecesrainbow.org/56784/lydia-2









Thursday, March 20, 2014

Happy World Down Syndrome Day! 3-21

Happy World Down Syndrome Day!  
We are celebrating our little Love with an extra chromosome. :)











I may have gone a little overboard with the pictures, but he's so cute I can't help myself. :)  Our baby is going to be six years old in ONE MONTH! 










Wednesday, March 19, 2014

"Oh yeah, she'll definitely be able to walk."

On Tuesday, we spent the whole day at a Cerebral Palsy Clinic for Nora.  She was evaluated by a doctor of physical medicine and rehab, a speech therapist, physical therapist, occupational therapist, social worker, nutritionist, and an orthopedic surgeon.  And then our little champ had an appointment with the neurosurgeon after all that.  


We learned a lot of exercises we can do to help build her fine motor skills and speech.  We also learned some stretches for her legs and left hand.  

The most encouraging part of the day was when the orthopedic surgeon said, "Oh yeah, she'll definitely be able to walk," and the physical therapist agreed.  We did not expect them to say that at all.  I mean, we think she will be able to walk (because we believe in miracles, she can bear weight on her legs, and so far she has caught on quickly to physical skills), but we just never expected to hear those words come out of a doctor's mouth.  So cool!

The therapists and orthopedic surgeon were impressed that her muscles are not that tight, at least not nearly as tight as they expected them to be considering her past sitting in a stroller all day.  They were impressed with all the progress she has made since coming home.  The PT and surgeon said that they think she will be able to sit up independently (without needing to use her hands to support herself) within a few months if we keep working on it.  Wow!


Everyone agreed that there is not anything wrong with her spine that they can see.  She has just compensated for her low tone in her trunk (core of her body) and when she leans forward it looks like her hips do not follow suit with her upper body.  We were happy to know that there is nothing wrong there with her bone structure.  Her bone density also looks decent which was encouraging (*When kids lack proper nutrition and do not bear weight on their legs for a long period of time (like our kids), they can suffer from low bone density, sometimes resulting in osteoporosis.  This makes walking tricky because bearing weight on their legs could lead to bone fractures).  

However, Nora's hips are slightly out of socket.  Again, the surgeon was amazed looking at her X-ray that they were not more out of socket considering her past.  He said typically with histories like hers they see much worse damage.  She will need surgery though, probably in August, to bring her hips back into socket.  He wants us to wait about five to six months before doing surgery to let her keep progressing since she is doing so well.  Once she has the surgery, her recovery time will be four weeks long, and during that time she will not be able to bear weight on her legs.



At the end of a long day, we met with Nora's humorous neurosurgeon for the first time.  He looked over her MRI and said that he is pretty sure that she does not need a shunt or any other brain surgery.  She does not have hydrocephalus.  Since her fluid is asymptomatic, it is not considered hydrocephalus anymore.  Basically, she was born with hydrocephalus and should have had a shunt put in her brain at birth to redirect the fluid out of her brain.  She never got a shunt, but her brain took care of the fluid itself and compensated for it, so now there are no symptoms of it.  This neurosurgeon will not operate if the child is asymptomatic.  There is what he described as a sort of gray matter in her brain now, but it does not need to be treated.  The neurosurgeon asked us to see a special doctor who will look in the back of her eyes just to make sure there is no pressure on her brain.  (He wants to be sure he is correct about her not needing surgery.)  Shortly after coming into the room, the neurosurgeon said that he can tell she does not have any symptoms because she is so happy.  If she were experiencing pressure from fluid build-up in her brain, she would be miserable with headaches and other symptoms.  That is good news.  If she is cleared, then her only big diagnosis is mixed cerebral palsy.     

We have lots of follow up to do-- scheduling her hip surgery, seeing the doctor who will look in the back of her eyes to make sure she does not need any brain surgery (ie. shunt or another method), starting various therapies, going to a feeding clinic, getting her braces for her legs and a splint for her left hand.  One step at a time :)  We will start with an appointment we already have scheduled next month to order her equipment.     

At the end of the day, we were all exhausted, but it was a great feeling having a team of people behind our daughter supporting her. :)  We drove home amazed at how God has graciously sustained our two little ones.  The Lord has been so gracious to Nora by keeping her legs loose, her hips still partially in the sockets, her brain dealing with the extra fluid in it on its own, and so much more!  He really has protected our kids.  We have MUCH to be thankful for!