Monday, April 14, 2014

Walk, Don't Run

This post was a hard post for me to be satisfied with.  I let it hang over me for a long time before I felt it was ready, I suppose, for the same reasons that I have a little bit of an awkwardly long pause when someone asks, "How are things?"  It is complicated.  I hesitate because I don't want to portray the situation as unbearable or regrettable. I don't want adoption to look horrible or like something we are not blessed to be walking through.  Things aren't bad.  M is doing fantastic in the scheme of things.  Nine months home.  3-6 months of developmental growth.  Six pounds of weight gain.  I'm told by therapists she is doing "amazing."  Well, just read.  It's all there.  Still, this post highlights a mindset shift.  A shifting down of the gears that brings us to steady walk.  And as you read, please, please keep in mind we would do it all over again in a heartbeat!

My continued thanks for all those who do ask of us, text us, call us,  and seek us out, even when my answers are awkwardly delayed, muddled, rambling, uninspiring, and repetitive.  I can't tell you how much better I feel, just by speaking out loud what I am thinking and fretting over.  It helps every time.
 

Nutritionally

Now you see it,
now you don't.

That's right!! We graduated from the gtube!  M started eating, drinking, and taking meds exclusively by mouth the week before Christmas!  We removed the gtube at the end of January.  Hee-hee. Yeah, we don't mess around with unnecessary gtubes. 

How did this happen?  Well, I was fed up.  Up until the week before Christmas, M was taking everything through the tube.  She would fuss with any food coming towards her mouth.  It just didn't settle well with me that she had the physical ability to eat, her teeth had all been fixed, and she was still refusing to eat.  Occupational therapy (OT)/feeding therapy encouraged us to just continue offering her food and have her around when we had meals to allow her the choice to start eating by mouth.  That was getting us nowhere.

Fortunately, a lot of Pleven families have connected via a Facebook group.  Other moms shared their routine on eating and their hearts for their children overcoming eating obstacles.  One mom included a thought that instantly spoke to me and allowed peace in my next pursuit with M.

 "Sometimes what the "real world" views as compassion is not something we can do in their way as adoptive mothers. We have to do what is best for our children and sometimes it may seem harsh to the outside world, but I think God helps us to know what is best for our kids. As I force my son's mouth open to take a bite of food until he remembers how to do it, I know it is done in love."

So....wow, yeah, exactly right.  So the next day, we started the new feeding routine.  I had been brushing M's teeth for several months and under the direction of the dentist, she had told me to slide my finger along M's lower jaw, insert my finger between her jaws in the back (where there are no teeth) and she would be forced to open her mouth.  It had been a struggle in the beginning, but M had started recognizing the toothbrush, opening her mouth and allowing me a quick brush.  So if it worked for toothbrushing, why not try for food?  I repeated the same advice and then slipped a bite of food in.  She didn't like this routine.  She cried.  But she had cried with the OT plan too.  After she swallowed, we did it again.  She cried more.  The first day was the worst.  The second day better with fussing and her angry.  The third she would open her mouth most of the time and then test me on other bites, where I would again need to open her jaw.  By the fourth day, she did it all by herself.  She wasn't enjoying eating, but she was doing it! 
 Now, however, eating is good.  She loves it.  She eats anything blended to a complete puree. Yogurt is her absolute favorite.  I'm happy for her!  She gets to enjoy for the first time a basic necessity and a pleasure in life! Not to mention, eating by mouth will really pay off in the speech department by increasing tone and awareness.



Our Christmas Card 2014
'Gifts of love and time are surely the basic ingredients of a truly merry Christmas!'

Neurology

 M's seizures continue to become more frequent the longer we are home.  We are now seeing at least 3-5 seizures a week.  Those are just the ones we catch, so that number is probably higher.  This past week has been particularly scary as we reached 11 seizures within seven days, with three in one night, and that night we came close to using her emergency medication and then needing to call 911.  Fortunately, we felt like she was coming out of it, and we were correct.  Her seizures are still while she is sleeping, but have migrated to daytime napping as well.  
Early morning seizure care, during postdictal stage


We have undergone medication changes in effort to decrease the seizures.  We came off of valporic acid (Depakote) which has taken away many side effects, and added in Lamctil and Keppra.  The neurologist admitted that M is unique and they don't understand why she is seizing.  She used the word "progressive" at our last appointment; "progressive" still just a possiblity, but obviously, not what we wanted to hear.  We are awaiting the results of a sedated MRI, EEG, and a lumbar puncture that M recently underwent. This MRI looked at a different slices of her brain than the last MRI and lumbar puncture examined her neurotransmitters.  


Endocrine

M's growth hormone level has come back into a low normal range!!  Back in the fall we had a lengthy test done that showed her pituitary gland wasn't functioning and had made the decision to wait for environmental and nutritional improvements before starting growth hormone shots.  Well, her latest test revealed that it is coming back online.  So she was suffering from psychosocial dwarfism from the terrible conditions in her orphanage.  Paul was right to insist we wait.  He is good at waiting and remaining calm during the wait.  She has not gained any height since being home, but now, we can expect that she will.
iphones are fascinating ;)
Fascinating from this angle too...

Developmentally

We are seeing progress in M's physical and cognitive development.  Generally she is being assessed at a 12 month old level.  So we have gained between 3-6 months of development since she has been home.  All of her sensory processing therapy is still underway and we are seeing improvements there as well. 

She is getting so much stronger.  More of her day is spent with her in an upright position rather than laying down.  High kneeling is easy for her now, and she can hold that without support for about 30 seconds.  She will pull to stand if her hands can tolerate the supportive surface.  She can also lower herself back down from a standing position.  We are working towards getting a gait trainer that will allow her to build her tolerance and technique for walking in a safe manner.  


M is really starting to babble now.  Usually when she is playing with a toy and she thinks no one is listening.   None of the speech is directed in a meaningful manner towards anyone or anything.  We are working on some sign language, but again she hasn't really made the connection.  Her tactile aversion makes it difficult for me to form the signs on her hands.  

Random other developments....she has used a pincer grasp, she has touched her food in curiosity, her eye contact has improved,  she is starting to manipulate her tongue inside her mouth and performing some rudimentary chewing, on occasion she will follow a pointing gesture from us, looking in the general direction of the point,  she is using both hands more frequently in a midline position, and my favorite: she is starting to smile in response to seeing us smile.  

I look up most developments to see what typical age the development occurs.  I looked up the smiling thing:

"Infant smiles become a more complex and useful tool of social communication between 8 and 12 months of age, with "anticipatory" smiles: smiling and then turning toward another person, expecting to receive a smile in return.


Although scientists can't be absolutely certain why anticipatory smiling develops at this age, they have formed a hypothesis. Babies at this stage of development have increasing strength and mobility, and are able to sit and play apart from their mothers. They play, then they look for their mothers, and their mothers look back and smile. They begin to associate the happy arousal they feel during play with looking for their mothers, and with their mothers' smiles. Before long, a baby anticipates the progression and offers a smile before looking in her mother's direction, increasingly certain that mom will be looking and will smile back. This is a simple but powerful lesson for a baby: that her interior feelings can connect her to others, and can shape the behavior of others.

Making these associations - between self and others and between emotion and behavior - fuels the development of an infant's social skills. By 8 months of age, with just a simple glance and expectant smile, a baby declares that she is already a powerful communicator, ready to enter and participate in our highly social world." - www.parenthood.com

Audiology

M had a sedated hearing test performed.  The test came back normal, revealing that her auditory nerve is performing normally, and taking the signals all the way to her brain.

Other Clinical Areas

We are followed by 14 different specialists at Children's Hospital.  Every 4 - 6 months we will continue to meet with them.  This latest round did not reveal anything notable, and mostly involves me telling them what progress I see.  If we see M ceasing to develop in any area, they will be available for consultation.  It makes for a lot of appointments, but at least, they will be ready.

Enough Business Talk

So, how is it going, like... for real?  Hmmmm, in some ways better than expected, in others, we are letting go of what our expectations were and simply walking it out.

Paul and I looked at each in mid January and said "It isn't getting better.  It isn't slowing down.  It may not slow down for years, if ever.  We are exhausted." Reflecting on the past seven months, I realized that since M had been home I had been operating in an urgent manner.  Perhaps it was the unexpected admission to the hospital when she first came home, and then the eating problems, and the doctors searching for reasons other than neglect for her development,  her seizures worsening, somewhere, along the way I developed a mentality of "we have to hurry and figure it out, give her the opportunity to get 'better' quickly, and make up for lost time." This mentality wore us out.

In pursuit
So with some of these realizations, we decided to take a trip to Disney World.  Grin.  We had wanted to take our little ones the previous year, but we were in the midst of adoption fees.  Then we thought we would wait till M was home and "better."  M was going to have more procedures starting in March, and while we hoped that they would reveal no new diagnoses, but realizing life could continue to evolve, we decided to go at the end of February.   M did great and our other two children made lots of memories!  So much better than we planned for.  We had purchased noise dampening headphones for her, I had made a weighted blanket, and then we took darkening blankets for over the top of the stroller.  She could be in a sensory deprivation state when needed and we could adjust the level of stimulation.  Extended family joined us for a visit and to lend extra hands.  It was interesting to see how she liked some of the rides.  Frequently, we needed to keep the headphones on, but the slow boat or tram rides that rock and bump at times, she would actually giggle and clap.

Enjoying the ride,
smiling,

clapping!

Being back at home on the other side of our vacation, we are trying to adopt a different mode.  A marathon mode, not a sprint mode.  It doesn't mean we are planning on less appointments or procedures, but rather a different philosophy.   I recently read Ann Voskamp's post "When You are Finding It Hard to Keep Up (Chased by Grace)," and it really resonated with our existence and the future we see before us.  As we pursue a future for M, and with M, we have to trust that we too are being pursued by His goodness and mercy, and that that duo is going to get us before anything else.  And in a practical sense, we are in a state of evaluation within our home.  For the first time, I am having a responsible young lady come in to my home once a week after school and watch my other two children, while I care for M and accomplish something.  I am thinking about our homeschool routine and how that needs to more integrated and tended to.  We are making time for exercise for Paul and I, as a stress relief for us both and, for me, to remain strong enough for lifting M.  Praying about the new normal with M, not for the old normal plus M, is a new philosophy.

I have posted before about attachment and bonding with M.  Changes in that area?   I think so.  M allows her hand to linger on our hands or arms more now when she is being held.  I can touch her hand if she is distracted a little before she immediately pulls away.  She has started directing some smiles at us, but hasn't laughed at us yet.  She reaches for me during therapy sessions when it gets overwhelming. 

First Thanksgiving


My feelings for M are evolving too.  I want to tell you that I felt complete love for M from the very beginning.  I thought I would, but I didn't.  I don't believe it was a strictly adoption versus biological problem.  I believe it was the institutionalization.   It was M's reaction to our advances towards her that made it more difficult for me.  I knew what the books said, "she may not be used to touch, she may not be comforted in the typical ways, she may not trust you...," but I didn't realize how that would make me feel when it was happening.  I didn't realize how much I expected her to accept my love, so that I could keep loving her. 

I have referred to the situation as my little broken vessel.  It wasn't until we started pouring love into her, that we could see all her little cracks from previous mishandling.  Our efforts seemed to go through her completely.  I started feeling like an amazing caregiver, but not her mother.  A mother would know how to make their child feel loved.  What to do in this scenario?  Keep practicing love.  That's all we could do.  Try to modify the application of the love to suit her, but we had to practice.   And now, we are starting to see those cracks fill in ever so slightly. 

Still, the worst times are when she is obviously having a flashback or reliving a memory of some sort, and goes inward while outwardly projecting fearful screaming.  She almost can't see or sense us when she is that upset, she is somewhere else, and very terrified.

If our goal was to stop a single episode of crying, we could put her in her crib and know that she would comfort herself as she had done for years; this would seemingly be a success.  And initially that had been our approach, because we didn't want to stress her out and take away her safety net. However, our goal isn't to stop the crying but rather help her process her grief, end her isolation, and restore her well-being.  It reminds me of a scene from “Quigley Down Under.” (Tom Selleck? Definitely, a blast from the past, but for some reason, this is what I thought of.) Remember that scene where the woman is protecting the orphaned baby from the dingos? Her first instinct is just to quiet the baby, almost smothering it.  Then she gets her wits about her and decides it is the dingos that have got to go.  "If you want to cry, you go on and cry.  Hell, let's both make some noise."   The ghosts of M’s dingos have to go.

So recently, we are trying something else.  When it goes into fullblown core meltdown fear, we hold her.  She goes into a pushing out of our arms raging lunatic; still, we hold her.  If we are together, bearing witness to her grief, taking the physicality of fear-turned-anger, and giving steady comfort in return, we hope she will be better able to process her journey to this point. 

Letting her process her emotions in our arms, is our goal, but it is gut-wrenching. For me, I can only imagine what she is crying out and trying to tell us, 

"It was so scary."
"I was alone."
"I was hurt."
"Nobody listened."
"I was hungry."
"I was sick."
"I didn't know what was happening."
"Why weren't you there then?"
"How can I know it is over?"

Showing her in those moments "there is nothing you can do, to make us leave or hurt you," takes more than us. It takes a really big God with a mighty hand on our shoulders, bolstering us to stand and listen to the sorrowful effects of depravity, and then bringing us back out of this onslaught still functioning.  

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.  2 Corinthians 1:3-4

So that is the update.  I hope that you can see what we see.  Life is evolving.  Life is harder.  Life is much more beautiful!


PS>
 I wanted to say one last thought, hopefully, encouraging.  A thought that I mentioned to a friend at church and she said "you should share that!"  So here goes... 

I have a lot friends and family that have recently had babies.  They are doing the up all night, dog tired, thing.  Sitting and feeding and holding their babies.  And if they are like me, they may be frustrated.  I remember thinking with my newborns, I have so many other things to do, I am not accomplishing much sitting here.  

With M, I have gotten to see first hand all the effects of what happens when what you ARE doing...doesn't happen. I know the emotional impacts of touch and meeting your childs needs are widely publicized, but in reality the impact is further reaching. I want to give you some examples of what you actually are accomplishing in your day.  
  • Each time you nurse, your baby is building muscles that are going to allow for speech. 
  •  Each time you count their toes, they are realizing that they have feet,  and one day will be able to walk without needing to look at them.  
  • Each time you switch sides nursing you are helping their brain realize they have two arms and two legs to use together in completing tasks, as each side takes turns being pressed against you.  
  • When you lift them to burp from lying down their inner ear, followed by their brain, is learning how to navigate changes in gravity and will help to keep their body balanced and oriented. 
  •  Allowing them to hold your finger or grasp your necklace will help them regulate pressure that is necessary to hold items, like a spoon or crayon. 
  •  Kissing their faces will acclimate them to scents and moisture that one day will be in their foods all over their faces.  

All this is helping to build a successful, functioning, little person.  So keep doing what you are doing, mamas!









4 comments:

  1. Thank you for sharing your journey. We start ours soon and I will probably come back to re-read this as I will probably be more "sprint" minded too!

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    1. I am counting the days with you, till you bring home Christy! What a day for rejoicing that will be, friend!

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  2. Thank you for taking the time to explain this in so many dimensions. I am going to send Ann Voskamp a link, she will be so happy that her post spoke to you! Peace and blessings....

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    1. I would love for her to know that it helped our family!

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