Monday, October 13, 2014

(Almost) Two Months Together!

It has been almost two months since we "busted Little Man out of the orphanage," as Baby Girl so delicately phrases it.   We have changed SO much more in the last two months than I think we realized we would.  We have become closer as a family, dealt with new struggles, had major victories, and morphed into a new family with four members who have all learned to adapt, grow, and love more deeply than we previously thought possible.

I would say that Little Man adjusted and bonded to us very quickly, but the last two weeks or so, we have noticed that he seems to have an even firmer attachment to all of us.  As less things are "new" and most days have some type of routine (although some days, I use that word loosely!), his ability to trust us seems to deepen.  He has learned that when Mommy goes to the store, she always comes back.  He has learned that Daddy can make him belly laugh, and is the best encourager as he works towards more mobility and skills.  And he has learned that Sister is going to tackle and hug him more than he would ever like, and sometimes it is easier to just hug her back than try to get rid of her.  ;)

I would venture to say that most adoptive families have more struggles in attachment than we have had.  I can't really pinpoint what has been different for our family.  A lot of the attachment process has been easy for us.  I think there were a lot of factors that have played a part in that.  He had a nanny in the orphanage who truly loved him.  He is fairly young, having just turned three.  There has been a lot of prayer wrapped around us during the last year.  (I add this point to prove the power of our God, not to say that families who have more struggles are lacking in prayer or faith.  Surely the LORD of the universe has a different path for each family to walk, and His denying an easy journey is NOT evidence of Him being removed from other families.)  I will also add that many families experience a lot of tantrums which can involve hitting, biting, scratching, etc.  Physically, Little Man isn't really capable of throwing himself around like that in the way many physically healthy children are.  He does have "institutional behaviors" that are apparent, but if he is angry, it is easier for him to resort to those or crying, since physically thrashing around is somewhat impossible.  We did so much training and preparation for the attachment stages, even more than was required of us by our agency, I was expecting it to be harder.   Our social worker has warned us that we are likely "honeymooning" with Little Man right now, and that we may begin to see more severe issues arise in the coming weeks and months, especially as his medical intervention plays a more steady role in our day to day.   But for now, we continue to praise the LORD for His mercies and focus on being extremely intentional in how we continue the bonding process with Little Man.

All of that does not mean that we have not had really hard days since we have scooped up Little Man and fled the orphanage.  In the early weeks, he refused to be out of arms' reach of me, and would not allow anyone else to hold him, even Daddy.  (Which sounds ridiculous to complain about that being "difficult",  but I assure you, when you are physically and emotionally exhausted, sometimes you just need a minute without children or dogs trying to be physically touching you 24/7!)  When he seems stressed or on "high alert" sensory-wise, we still notice him drifting into those tendencies.  For the most part, we have allowed family and friends to hug and play with him, but we allow Little Man to dictate how much he can tolerate.  If he wants a hug, great!  But sometimes, all he wants is a high-five.  And sometimes, even that is too much.  We are getting better at reading his cues.  And if we notice he is slipping back to not wanting to go to Daddy, we have to cut off all touch from others.

I would say that the biggest issue we encountered was after he was sedated for his CT scan, he woke up in the initial recovery room alone (I was not allowed to be there- despite desperate attempts to explain how very psychologically scaring that would be for him).  After kids are sedated, they are taken into a room with only medical professionals to ensure that they can be woken up.  Typically, they are so groggy from all of the medication, they fall right back asleep and are immediately taken into the recovery room where mom and dad are waiting.  Well, Little Man woke up initially, realized he was alone and drugged, and LOST IT.  I could hear him screaming from down the hall.  They finally brought him to me, but the damage had been done.  While most kids would typically doze back off and sleep for most of the afternoon, Little Man was awake until after midnight that night, terrified of going to sleep.  (Of course, we had just effectively "taught" him that it was possible for him to fall asleep with mommy holding him, and wake up alone and drugged with tubes coming out of him.)  That was a VERY rough week.  It is difficult to be able to re-train a child to trust you when you have limited language ability, and he isn't capable of falling asleep with you holding/touching them.  We spent many hours laying on the floor next to his crib, whispering promises of our love and devotion to him.

Even despite those setbacks, it has somehow forged a stronger bond as we actively seek out opportunities to prove our "forever-ness" to him.

Several people have asked about what Little Man's medical situation looks like, now that we have been to all of the specialists.  And as a nurse, I would be curious too.  ;)

We will have a long few years ahead of us.  There will be long hours of therapy, countless pieces of equipment to help give him new mobility and also to correct what three years of being mostly in a crib has done to his little body.  His knees and ankles are contracted (meaning that they don't bend and straighten completely) from lack of being worked with over the last years.  He also has severe muscle weakness, especially in his trunk and legs.  And he is very underweight.  Even though Baby Girl is 6 weeks YOUNGER than he is, in pictures of the two of them together, you can easily see just how tiny he is.

So after being to several specialists, we have found that his shunt (for his hydrocephalus) is working perfectly!  He has been fitted for several different things to help correct some of the above issues.  Currently, he sleeps in knee immobilizers, which help keep his knees from bending up in a "frog" position, which they naturally do from years of lying on his back.   This is what they look like:



We will go back to the doctor to pick up his other pieces of equipment in the next few weeks after they are made.  (They have to be made specifically for each patient, which takes a little time.)  He will be given something called DAFOs, which will help re-align his feet and ankles to the correct position.  Currently, with they angles they are in, it is impossible to be weight-bearing.  Here is what they look like (except his will have fun jungle animals on them, if I remember correctly!):



Next, he has a very special piece called a parapodium on its way.  (I still call it the stand-y-up-y-thingy, because I can never remember the word parapodium.  I think that is more medically correct anyway.)  This will help ensure that Little Man is UPRIGHT for practically the first time ever!  Here is what that looks like (many thanks to the child on Google for making such a cute picture):


Now, he won't be able to walk in this, but it will help him be upright and weight bearing, which is a HUGE thing for him both medically and socially.  He will be able to stand next to a table and play play-doh with his sister, color, eat, and do all sorts of other fun things that he has only been able to do lying on the floor or sitting in his high chair.

We were able to find some more reflexes in his legs and feet.  His muscles have been very affected, but it is difficult to tell how much of that is from the Spina Bifida and how much is from institutional delay. Ultimately, it doesn't really matter.   What is nerve damage from the SB is pretty much permanent, but we can help him develop muscle mass and more range of motion in his joints.

He has gained a whopping 3 pounds since pick up!  So he is now weighing in at 20 pounds and 15 ounces!

Now for the news everyone is probably trying to read between the lines for:  The doctors to think that he WILL be able to walk some day!!!   At this point, we aren't sure if that will be with crutches or braces on his legs, but the plan is to move forward aiming for that goal!  But we are thrilled that all of the different specialists are in agreement that walking is a realistic goal!  It will probably be several years from now before we get to that point because we are working from more set-backs than a newborn with SB that immediately goes into therapy.  We have 3 years worth of extra issues to correct before we can start tackling walking.  But none of that surprises us.  We were prepared for this type of timeline when we committed to Little Man a year ago, although we weren't even sure if walking would ever be a possibility.  Now it looks like it is the most likely outcome!





So hooray for these extra blessings!  We not only have the most amazing son God could have blessed us with, but now we have such huge victories to work toward!  We have learned SO much about Little Man, not only medically, but also about his personality.  He is so sweet and loving, and a little mischievous too.  ;)  He is the perfect fit for our family!  Only an all-knowing and all-loving God could have pieced all of these pieces together.   (Seriously though, as a small example- only God could have told me to go to nursing school, even if it wasn't in my plans, then encouraged me to trust in Him when I whined about how much time and money I spent on nursing school just for Him to tell me to be a stay-at-home mom.  I imagine He grinned a little when it clicked in my head that I had to become a nurse to be able to navigate all of the future things with my son, who was already alive on the other side of the world, even though I had NO CLUE!!!  Why do we struggle against Him?  He ALWAYS knows best!)

With almost two months under our belts, we have had a lot of time for reflection.  I told the Hubs the other day, one of the biggest lessons I have learned is about the Father.  It is a common saying that "Children are just on loan to us from the LORD."  Meaning that God gives them to us to love and raise, and return to Him, because He alone is the Creator and Master of life.  It is our job as parents to provide, love, and cherish these precious babies, but ultimately release them to fulfill the destiny that He has planned for them.  

But the pain of seeing how much we have missed in Little Man's life is just a very blatant reminder that my children are not my own.

They are His.

He alone is the one who sustains them.

Little Man didn't have Mommy and Daddy for the first three years.  But, he did have a Father, who can sustain, love, and protect him like we will never humanly be able to do.   So now I look at Baby Girl and think, I have been here all along, but you have always belonged only to Him.   It is certainly a humbling place to be when you realize that the Giver of Life is truly in charge, no matter how many phonics videos or healthy meals you give to your kids.   In some ways, it will make that day that I have to let them grow up and leave the nest somewhat easier.   (As much as the mere thought of that day already makes me weep.)  I know I will not be "releasing" them.  They are already His.  I don't give them to Him suddenly when they turn 18 and want to move away.  I must surrender their lives to Him every day.

They've both been His all along.