Saturday, July 27, 2013

Home and Healing

This post is showing as published by Paul.  It isn't. This is Maria writing. :)

I know that there have been friends and extended family wondering...'what's happening out there?', 'Is she home?', 'Are they ok?'   Yes, we are home.  We have her!! We are ok and are in a period of great transitions.

While in Bulgaria, 'Gemma' had a seizure in the hotel room.  This is significant because she supposedly hadn't had one in 4 years.  We contacted our pediatrician in Seattle and got some advice for any other seizures, and then continued with our week.  'Gemma' was eating well, but not drinking well at all.  She wouldn't drink from a cup although we were told that she is able to.  So we took to giving her about two teaspoons at a time through a syringe.  We worked up to a cup a day by Friday, but obviously this isn't enough fluid.

We made it home on Sunday July 14, and proceeded to keep pushing the pedialyte and juices.  Starting Monday she slowed down eating and by our doctor's appointment on Wednesday wasn't eating or drinking really at all.
the whole family at the airport

Due to the complexity of her health history, and her refusing to drink and eat, we were admitted to Seattle Children's Hospital.  They placed a ng-tube and started extensive labwork.  Her labs were coming back within range, except her glucose levels.  They are dipping very low and rebounding.  After monitoring her for four days and having been visited by all the different specialties pertaining to her health concerns, we were released.

our two daughters, both are six years old

Now at home, we are monitoring and recording her glucose level before every feed and once at night.  This notetaking will help the doctors ascertain if the dips in her glucose levels indicate an underlying condition or if they are a temporary byproduct of her poor nutrition.  It is possible that the seizure activity she has had in the past are related, not to epilepsy, but to hypoglycemia or diabetes.  Also, 'Gemma' is receiving nearly all her nutrition through her ng tube.  The feeding specialists believe that her refusal to eat is a reaction to the stress of coming home and should resolve after therapy and some time.  But for the foreseeable future, we are providing 5 meals a day through the ng tube.  
little brother sharing a hospital bed for naptime, both are wearing a 3T size

Starting in August we will be working our way through outpatient clinics at the Children's hospital.  She is currently scheduled for Endocrine, Neurology, Nutrition, Gastroenterology, Neuro-development, Rehabilitation, and Biochemical Genetics.  We will be starting feeding therapy at home on Monday with a speech therapist and will have weekly to biweekly appointments with the her pediatrician that specializes in international adoption cases.
first night home

So life is very full at the moment.  It would be dishonest to say that it has all been joyful.   It has been exhausting, stressful, frustrating, and worrisome, as we have tried to reach stable ground again with her health. I have struggled with anger towards those who damaged her health and development. We have been impatient with each other while trying to get our footing again.  But not all is lost.

We are allowed to stumble.  Having moments of failure doesn't mean we have failed.  Good days are when we remain focused on fostering long term bonding and workable family dynamics, and rely on our faith that the One who lead us to this little love is walking with us now.  He offers His grace to us daily; we just have to remember to breath and accept it.

PS.  We will now be referring to 'Gemma' as 'M.'  This is the first letter of her new name and for privacy concerns we won't be sharing her new name on this public blog.