Saturday, November 16, 2013

17 weeks of Together

Wow, 17 weeks together!  That is more than a quarter of a year!  Yay!

We finished up a majority of our previously scheduled medical appointments in September and have spent October and the beginning of November mostly enjoying a breather and bonding.  Everyday life feels good with the occasional days that seem like setbacks, but God continues to return on His promise to sustain and bless us.

And this post is going to be a lot like the last.  A little long-winded indeed.


M had her G-tube placed in September.  The surgery went well and we are loving the simplification that the G-tube has brought to our lives.  After dealing with ng tube for 2 months, we were overdo for a break!  M can now get anything in her tube with little concern in clogging it.  Since it requires less fluid we are able to supply more calorie rich blends for the same amount of volume.

 As far as eating by mouth, we continue to work at it. There are several different approaches that have been suggested to us for increasing her willingness to eat.  The first, keep working on tastes and developing her palate.  The second, increase her tolerance of textures.  The third, work on having her touch her food and moving to having her feed herself.  It can be discouraging because any of these can overwhelm her and lead to a very unsuccessful feeding episode.  The foods that she will sometimes tolerate are plums, yogurt, and bananas.  All are pureed and we work to add in new flavors by blending.  Any texture is very upsetting for her.   We are working to have her use a sippy cup.  I try to remember that we have a G-tube, and therefore, we have lots of time to work towards eating, but darn it, sometimes I just want my child that used to eat enough to sustain herself, to want to eat with us and love it!


While M was under anesthesia for her G-tube placement, the anesthesiologist noticed M's teeth.  She actually stepped away for a moment to have me paged back to the surgical center.  When I got on the phone with her, she asked if I had "any idea how bad her teeth were?" She clarified that she specialized in dental anesthesia during college and said that they are horrendous and appeared that they would be the cause for the eating problems we were experiencing.  I told her we suspected that they were bad, we had seen the dental clinic at the hospital, and were scheduled for dental surgery about four weeks later.  She was glad we were on it, but again, reiterated that her eating problems were going to lessened after the dental work.

 M ended up having three abscessed teeth all in the front that were pulled, one cavity filled, one cap placed, and sealant over all the teeth.  Those three abscessed teeth must have been tremendously painful and would explain her reactions after every single bite.  Her adult teeth are all set to come in (one is now visible after one of her baby teeth became loose and mama "helped" her pull it out) and appear to be well-formed.  Another Yay!


 M was assessed at being developmentally at a nine month level.   She can sit up, although still prefers to lay on her back or side.  She can crawl much farther now than when she came home.  She can sit at a toy in high kneeling with or without steadying herself with her hands.  She is making consonant and vowel sounds, but is not combining them.  Her eye contact has greatly improved and she smiles more frequently. 

M has been diagnosed as hypoactive; her response to stimuli is often to shutdown, becoming less responsive.  Most families seem to be dealing with hyperactive responses to stimuli, requiring a method for calming their institutionalized child down.  Either way requires work to achieve appropriate responses.  One effect of her institutionalization is tactile defensiveness.  Touch on her hands and feet are especially upsetting to her and will cause her to withdrawl.  As an example, she would crawl with her hands in loose fists to prevent her finger tips from touching the floor for the first 2 months she was home, and now only on unfamiliar surfaces.  Progressing beyond a nine month level will require touching cause and effect toys, using her hands to pull herself to stand, feeding herself, etc.

So to that end, we chose to begin Occupational Therapy first.  In October we had our first weekly appointment.  We are learning techniques to condition her hands and feet to normal use, and other elements of sensory input to increase body awareness (proprioceptive sense).  If M is crawling and is trying to fit between a narrow space she may catch her knee on something and not know why she can't crawl any further, when all she would need is to move her knee inwards by an inch or two and she would be able to continue.  This is what I mean by body awareness. 

In December we will begin physical therapy.  And speech therapy is on the horizon at some point.
Halloween 2013
"Back to the Future" with Marty, Doc Brown, & Jennifer


Well, all improvements in this area have been subtle.  About five weeks ago, M laid her head down on my shoulder for the first time!  She actually was relaxed and snuggling.   I hadn't even noticed that it had never happened before, until it happened!  She has started allowing her hand to rest on my arm or hand while I'm carrying her.  During therapy sessions and hospital visits, she looks to me to "rescue" her.  We've been cosleeping for bonding since the beginning, and she is now trying to occasionally lay close.

Our instinct with M is to hold and cuddle her as much as possible to form a connection.  While she is gesturing to be picked up more frequently, she definitely doesn't want held for long. Maybe she is bored or she doesn't like the touch or pressure of being held; whatever, it is hard to breakthrough her exterior and get to the little girl. Gotta work for those smiles, giggles, and snuggles!


M had her MRI performed. It came back completely normal! The malnutrition has not affected her brain in a physical sense.  Unfortunately, her seizure activity has continued increasing since coming home.  The first 4 weeks we were home, we didn't see any seizures.  Then we were witnessing at least one a week.   The neurologist responded by adding another medication to her regime.  M is now taking Depakote and Lamictal.  We have only been giving this to her for about 3 weeks, but now we have witnessed at least three seizures a week on this new medication.  We met with the neurologist this past week and sought a completely new plan.  In addition to seeming to increase the frequency of seizure activity, the medication has side effects including balding, bruising, and tiredness.  It is hard to learn new things and participate in living if you are tired all the time... So we are stepping down off of the Depakote, while waiting for the Lamictal to be slowly increased to documented therapeutic levels.  We'll see!

Surgical Inpatient


After the biogeneticist didn't see any outward appearances of a particular syndrome, the neurologist felt that we should seek a snip array genetics test for clues about the seizures.  The test looks for extra or deleted pieces of her chromosomes.  This test came back completely normal!  Yay!


When M first arrived home, she was hypoglycemia.  This caused the endocrine doctors to suspect a pituitary gland problem.  We had a long blood test done and in fact, M's pituitary gland isn't fully functioning, or maybe not at all.  The doctors suggested we start growth hormone injections.  Like most of her other diagnoses, we felt that this had to be a byproduct of her history of neglect and malnutrition and didn't really desire to start hormones. Upon asking others who have adopted from M's orphanage they suggested that M might have psychosocial short stature or psychosocial dwarfism.  Essentially it is medical term for what we suspected; if a child isn't loved and nurtured the body shuts down growing and works on surviving.  Most of the kids from M's orphanage probably have this, but M's is symptomatic with the hypoglycemia.  That sealed the deal for us. I don't know why the endocrinologist didn't consider this, but we will be holding off for at least six months to see if her pituitary gland starts functioning again with less stress and better nutrition.

Till Next Time

After a long day of hospital appointments, too tired to play
The last nine weeks have been much better than the first eight.  Our family is achieving a routine.  Through routine we get extra time for extracurricular activities.  Paul and I are able to step away from the family, individually usually, to work out or visit with friends, de-stress.  Our kids have started their activities and we've started participating in our homeschool coop again.  We are meal planning again (it is such a good thing when it gets done) and getting to chores that we have put off for months.

Some days are a struggle and gloomy.  On those days I tend to develop the mindset of "This is it."  This is where we live from here on out: bonding, therapy, feeding, bonding, hospital visits, setback, therapy, feeding...nothing is ever going to be different than it is right now.  Why isn't this work working?

prayer cards

 But then something will change.  Something small.  But something, and then we can see rewards from the hard work and we rejoice!  For God is faithful. He hasn't left us and He loves her more than we ever could.