No Right Click

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! 


   

Thursday, March 13, 2014

Noah's Heart Surgery UPDATE

Baby Bear,

We have had a wonderful three and a half months home together, haven't we?  You have made our lives so rich and given us so many laughs since you came home.  We love that you are our son.  We love getting to see you grow and learning what makes you smile and laugh.  We love that we get to be the ones putting a smile on your face and a laugh in your belly. :)  We are trying to enjoy every moment we have with you because we don't know which one will be the last.  

You see, when we got home from your birth country, we found out that your heart is in very bad shape.  It should have been fixed when you were a little baby, but only your pulmonary artery was banded, and you never received the proper surgery that you should have had.  We are so thankful for that band on your pulmonary artery, though, because although it should have been removed years ago after you should have had that heart surgery, right now it's probably what saved your life up until this point.  

You wouldn't know looking at you that your heart is failing, that the drugs are keeping it stable and without them, you will go into heart failure again.

You were born without walls between the chambers of your heart.  As a result, all of your oxygen-poor blood has been mixing with your oxygen-rich blood.  You also have a leaky valve in your heart (Mommy doesn't quite know what that means, but the doctors say it's bad).  The problem after waiting all these years to repair your heart and make it all better is that now your right ventricle is very enlarged and your left ventricle is small.  The doctors are afraid that if they separate those two ventricles (the way they should be separated with a wall in between them), the left may be too small and weak to pump blood.  If they can't separate the ventricles, they may give you an artificial valve, so that you won't have a leaky valve anymore.

Mommy scheduled your heart surgery recently.  As long as you stay healthy, you will have the surgery near the end of June.  That was a scary decision to make because that surgery comes with a high risk.  That it won't work.  And that you won't survive the surgery.  

But it's the best option to give you a full life, to give you a great quality of life.  One where you won't have to be crawling around with your oxygen levels in the 70s constantly, when they should be near 100.  One in which you can grow because your body is getting the oxygen it needs to grow bigger (the surgeon thinks you stopped growing at some point because with your artery banded you weren't getting enough oxygen to keep growing bigger).  One in which you won't have to be woken up in the middle of naptime everyday to take your heart medicine.  One in which you can have more energy.  One in which Mommy and Daddy won't have to keep our eyes open constantly for signs of heart failure.    

And best of all, if your surgery is successful, you will get to live a long life.  If there is no surgery, the surgeon thinks, at best, you will only live for 6-10 more years before your heart gives out-- but that's only if your heart is doing well.  If it doesn't do well, he is afraid you may only have one more year to live.  That's why we don't want to do a heart transplant.  At your age, it will probably take a year just to get a donor.  Your doctors explained that a transplant, in some ways, is like trading one disease for another.  That's why we've chosen the surgery- because we love you and want the best for you and think this is the best route...even though we are scared.      


So, what do we do now that we have a date scheduled for your surgery and it's a high risk surgery?

Here's what we do:
Snuggle as much as you'll let us ;)
Make lots of memories (We want to take you to the beach before your surgery :))
Make you laugh
Enjoy your awesome, goofy, adorable self

Keep building our bond/attachment- to give you something and someone(s) to fight for, if your body wants to give up

Keep walking in faith that you'll still be with us in July and August and for years to come- building those fine motor, gross motor, and oral skills and building those brain connections

Keep running to the Father who knows what it is like to be faced with losing His Son- who actually lost His Son so that we might live, who knows what it is like to risk it all so that others might live fully (except for the One who knew the victory to come, it wasn't really a risk at all), who can understand why we choose the risk, so that you may live a full life and have a better quality of life

We cling to Him.  We cling to Hope.   

We love you Noah Bear, more than words could ever say.  And you know what?  No matter how long we have this crazy wonderful gift of your life, we won't regret any of it.  You are SO worth all the time, effort, money, and paperwork to bring you home- even if we are only blessed with your life for a short time.  You are SO worth all the doctor's appointments, hospital stays, and medicine administering.  You are SO worth all the daily investment, dance parties, bedtime prayers, stories, tickles, and hugs.  Whether it's for six months or sixty years, we are SO thankful YOU are our son.  You amaze us, make us laugh so hard, and delight us daily.  

Love, 

Mommy & Daddy

Tuesday, March 11, 2014

Bathtime Fun


Look at that happy boy!  This picture was taken on Valentine's Day.  It does not seem like a big deal, but it captures a monumental step in his life at home so far.  Noah LOVES bathtime now!  He gets SO excited and begins to laugh when he realizes it is time to take a bath, as you can see above.  But it was not always that way.  When Noah first came home, at least for the first month or so, baths were very traumatic for him.  As in, he would already start screaming his head off as soon as I laid him down to undress him, and then proceed to scream the whole time until his bath was finished.  (He also hated being undressed for the first month or so, too.)  

Slowly, over time he screamed less and less while being bathed.  Eventually smiles in the tub came, and after that began the laughter.  From what we have heard from other Reece's Rainbow parents, it is pretty common for our children to come home and find bath time traumatic.  We do not actually know how much or how he was bathed in the orphanage.  We do know that he never smelled any different from day to day, and we visited everyday.  

I have heard different ideas for how to help our kids through this tough time of the day.  So, what helped Noah?  Distractions in the form of bath toys did nothing for him.  Having Daddy in the tub, too, did not seem to help.  A baby tub did not help.  

There were two things that I started doing that made the most impact, that sped up his adjustment to tolerating and then enjoying bathtime.  One was that I started bathing Noah every night, instead of every other night.  The repetition gave him a chance to know what to expect every night.  And it helped him get used to bathtime more quickly. 

The other thing I did was bathe him without any water in the tub (which worked well anyway, since the Little Mister thinks bathtime is the time to pee...).  I am not sure how much impact not having water in the tub had, but I think it took away the sensory input of sitting in the water (he did not know how to deal with new feelings-- ex. When we visited him in the orphanage, we used to give him cheerios.  Although he really enjoyed the cheerios, he did not know what to do with the new feeling in his mouth, and so, he would hit himself while eating his cheerios).  The empty tub was done simultaneously with the repetition of a bath every night.   Now he is happy with an empty tub or a tub filled with water.  Most recently, he has learned how fun it is to splash and blow bubbles in the water! :)  We are thinking swim lessons may be in order...

We are crazy thankful that our little guy loves bathtime now.  It really made a huge change in our day.  Now it is tempting to compete over who gets to bath him because he is such a riot now in the tub with his happy squeals, laughter, and goofy antics.         

And just for fun, this cutie: 

Monday, March 10, 2014

Black Eyes, My Heart, and the Savior's Healing


You may have seen the post recently about Noah's first black eye. We posted the cute-ish pirate patch picture, but I'm tempted to post the picture the real black eye picture. For shock value, ya know. Because that's not cute.

I have reflected in our home a number of times that the stimming behavior (repetitive, self-stimulating motions that are self-harming in Noah's case) that Noah does has taught me much about how I relate to God. See, stimming goes like this: I'm uncomfortable, tired, scared, lonely, bored, hungry, or mad, and therefore I will hit myself. Now my face hurts.... so I'll hit myself again to deal with the pain. Lather, rinse, and repeat.

Go ahead and nominate me for the dad of the year award. My first thought after the black eye incident was "Well, that was dumb." But my second, more humble, thought, was: "Yeah, but I do the same thing."

I haven't punched myself in the face lately, but I have given into gluttony, checking out from a hard day with TV and entertainment, finding creative ways to be lazy and selfish and avoid serving, surfing the web pointlessly, or any other host of idolatrous outlets. So, maybe not physically, but spiritually, yeah, I just punched myself in the face.

Here's how it goes: In my flesh I think I am alone. And I feel uncomfortable, hungry, tired, scared, lonely, etc. I had a bad day, I felt disrespected, I got a lousy night's sleep, or the project I was working on didn't go well. So, I deal with it the way a spiritual orphan does: sin. I think these stupid little things will comfort me, but when the stomach ache of gorging myself on cookies comes (entirely hypothetical), I feel worse then when I started. And my temptation is then to just move to the next "comfort" which satisfies my soul as much as punching himself in the face helps my son deal with his discomforts.

But I am thankful that for both Noah and myself there's another way. I could attempt to deal with these situations on my own, spiritual black-eyes and all, or I can run into my Heavenly Father's arms. "For you did not receive the spirit of slavery to fall back into fear, but you have received the Spirit of adoption as sons, by whom we cry 'Abba! Father!'" - Romans 8:15.


For those in Christ, we're not spiritual orphans anymore and we need to ditch the orphanage behavior. Just in the way I can stand up and proudly proclaim that Noah is an orphan no more, but my beloved son, in whom I am well pleased, so the Lord says the same about me. Not because of what I've done, but because of what Jesus has done.

We are teaching Noah to run to us to meet his needs, and I think the Lord is teaching us the same thing. Our stressors or problems might look different ("Holy frijoles, the heating bill was high!," "I've got so many exams piling up!," "Are we going to break up?"), and the "calming" behaviors we use might look different (food, entertainment, porn, laziness, defensiveness), but the solution is the same - to let the Lord meet our needs. To trust him to provide. To wait patiently even when the thing we want doesn't come on our timing. Because he is a good Father who knows what we need.


7 “Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. 8 For everyone who asks receives, and the one who seeks finds, and to the one who knocks it will be opened. 9 Or which one of you, if his son asks him for bread, will give him a stone? 10 Or if he asks for a fish, will give him a serpent? 11 If you then, who are evil, know how to give good gifts to your children, how much more will your Father who is in heaven give good things to those who ask him!" Matthew 7:7-11.



Tuesday, March 4, 2014

Black Eyes and Healing


My son gave himself a black eye two nights ago.  The next morning he woke up with quite the shiner.  I knew it would happen one day, but the cause was different than I expected.  It was not a rambunctious little boy accidentally hitting his head on the corner of a cabinet.  Instead, the swollen bruised eye came from his own fist.  On purpose.  He also took out a piece of skin on his finger from hitting his teeth.   

I do not know which came first.  He may have made his finger bleed and been so upset from the bleeding finger that he repeatedly punched next to his eye, or the other way around.  

How can I share with you the pain of seeing him like this?  The hurt of knowing that this is what five and a half years of neglect in an orphanage did to him.  (His custodial needs were met, but developmental needs were neglected.)  The sting of knowing that three months of love cannot undo five and a half years of damage.  


  He has come very far and does so well at restraining himself from self-harm.  However, there are still times, like last night, when he still hits himself (especially if we are not in the room).  It is the primary way he learned to deal with stress and pain growing up in the orphanage, his way of self-soothing.  
 No one taught him a healthy way to cope with what he was feeling.  

I want to be angry at everyone at the orphanage who did not love him.  But how can I be when I read his prayer book to him at night and it talks about forgiving others the way Christ has forgiven us?

Our Little Man will heal.  God has made children very resilient.  We have faith that he will heal our little guy and our little lady from the hurt of their pasts.  God has already done so much healing in their hearts just in the short time we have been with them.

But my heart is heavy for the children left behind, the ones who self-harm and rock themselves to sleep at night, never knowing the love of a Mama and Papa.  

There are two families in process, each adopting a little girl with Down Syndrome from Eastern Europe, that are very near and dear to my heart.  

Rachael and Tyler came home a few short months ago from adopting a five year old girl with almost the same diagnoses as our Nora.  Rachael has become a dear friend and we got to meet her and her sweet, spunky little girl while we were overseas for our adoption.  After returning home, God moved their hearts for a little baby girl with Down Syndrome and they will be returning to Eastern Europe soon. They are such an awesome family and seriously, look how adorable their new daughter, Gianna Natalia, is!  


Gianna

Please help them bring her home.  She is at such a great age and will be able to receive early intervention services, but more importantly, she will know love early on in her life.  She will soon experience so much love and laughter!  
Click on the link below to contribute to their adoption:

http://reecesrainbow.org/73327/sponsorgianna

The Feinland Family is also very dear to us.  They adopted two boys from the same orphanage as us and came home in 2012.  Their boys had similar diagnoses to our kids- Down Syndrome and Cerebral Palsy.  Both of them have thrived with the love of their family!  The Feinlands were such a huge help all along the way during our adoption process and continue to be an invaluable resource to us.  
God has turned their hearts toward sweet, beloved Della, who will be their first daughter.


Della

Della is tiny, but she is actually eleven years old.  Della reminds me so much of our Noah.  I see Noah's future if he had been transferred to a mental institution.  But it is NOT too late for Della.  There is so much hope.  
The love of her family will do wonders for this little lady!  Please help bring hope into Della's life.  Click below to to contribute to her adoption:

http://reecesrainbow.org/70811/sponsorfeinland-2

Would you consider contributing financially to bring these two sweet baby girls home?  Any gift is more helpful than you could imagine!  $5, $10, $20, $50, $100, or more.  Each and every gift is priceless.  You get to be part of these girls' stories.  A part of redemption.  And every single gift, however big or small, will go a long way in encouraging their families.  

Thank you for considering!