Thursday, March 1, 2018

Life with Lottie: one month later

It was one month ago today that Lottie joined our family.  I wanted to give an update on how all of us are doing since many of you ask and I normally only have time to say "pretty good" as we try to navigate crowds and hurry away from uncomfortable situations for her.

One month has brought many changes for us.  I never imagined how different it would be bringing Lottie home versus our experience with Anna Faith.  We knew that the difference in age and special need would bring special challenges but you can never really prepare or have realistic expectations for a life changing event like this has been.

Because of her age, her specific orphanage, and lack of medical services, Lottie has suffered a lot more detrimental effects from being in an orphanage than Anna Faith did.  We thank God there is no evidence of abuse and she also seems to not have any malnutrition issues either.  However, the deprivation of nurture, education, therapy, exercise, interactions with those with verbal skills, and medical interventions have caused many issues that will take a long time to correct.  We won't know for years, but some issues may never be fixed and she will have to live with them the rest of her life.
Kris and I had to go through the stages of grief when we hit this reality.  There are still many unknowns, but time will tell what being in our family combined with therapy services will do for her.
All we know is that if she were left in that orphanage crib for a couple more years, she would likely be crippled, disabled and alone for the rest of her life, living in an institution. That is the sad story for many special needs children in orphanages across the world who aren't chosen.

I try to maintain a positive light when I share our milestones and special moments with Lottie.  Some of the biggest "hallelujah" moments have been with bonding and trust.  She is now attached to her family.  She loves us.  She clings to us when she's afraid, lets us put her in our lap when she's tired or nervous, gets a twinkle in her eye when she falls asleep next to us.  She trusts us to not let her be hurt when in an uncomfortable environment.  When she cries, she seeks our comfort.  She's understanding what a parent-child relationship is, and for that we are so thankful.  Many parents who adopt children, especially children her age or older, may never experience that kind of bonding.  Another hallelujah moment is sleep!  She still has some night terrors but sleeps through them.  She falls asleep very easily at night with a parent next to her, and sleeps all through the night without us in the room.  She wakes up in the morning unafraid, gets out of bed, and with the help of a sibling and goes down the stairs to meet a parent.  To accomplish the hurdle of sleep regulation after a time change of 14 hours, a strange new home, and being in a big room with only a sister to share it with has been a big answer to prayer!

Lottie has had some progress in terms of her muscular control because of her freedom to move and play.  For those who haven't learned of her medical special need, she developed hydrocephalus either during or shortly after birth.  This was the reason for her abandonment.  It was never treated, just observed in the hospital.  From the measurements we have in her records, her head was very swollen with fluid for a while.  Because of the excessive cerebral-spinal fluid, there was neurological damage.  We don't know the extent of the damage, but we are seeing now the differences between an orphanage delay and a neurological impairment requiring therapy and correction.

The first issue needing immediate help is her vision.  She is near sighted in her right eye, has a stigmatism in both eyes, and severe strabismus in both eyes.  Her lack of depth perception and issues with balance and coordination could all be partially related to her visual issues.  An excellent pediatric ophthalmologist we use took two hours to evaluate her issues.  Her new glasses are in the mail and we hope will be on her in a matter of a few days.  We are excited to see a positive change from her wearing them.

Another issue needing lots of therapy is her speech.  While she is able to repeat some simple words to us, she has difficulty communicating with anything other than generic sounds, grunts, points, and gestures.  However, when we aren't activity working with her, she has been blurting out quite a few English words to herself, as if she's thinking out loud!  She has come to understand English extremely quickly! It has been both fascinating and frustrating to hear so many words used passively when she can't use them in communication.  We were able to come in for a Speech Therapy evaluation today with a very wonderful therapist we have come to trust and love in our town.  She diagnosed Lottie with apraxia today.  Apparently because of damage to her brain, she can not connect the words she is thinking with pronouncing and expressing them in active communication.  With a lot of work, patience, time, and effort, our speech therapist is optimistic she WILL be able to communicate with words.  But it will be a long process.

Another issue we are working with is her coordination and balance.  Lottie falls a lot.  She sometimes can't even stay in a chair and falls backwards, hitting her head.  She can't lift her legs to get into the tub, bed, or up a stair without a lot of help or effort.  She can't put on or take off clothing without help, because she falls down trying.  She is unable to do more than a shuffling walk because she works so hard to keep her balance.  We have an Occupational Therapy consultation in Jackson next Wednesday to start therapy in these areas.  This will help her fine motor skills as well, which are severely delayed due to no use of her fingers in play or activity for most of her life.

We also have appointments for dental care(her teeth likely have multiple cavities, thank goodness they are all baby teeth), physical therapy here in town (beginning tomorrow), and a neurosurgeon to examine her next week and order a MRI with sedation to see the status of the fluid in her brain and what kind of damage is there.  I have been on the phone, texting, and on the internet pushing and pushing people to the point of irritation to get her services.  Being in a rural area, dealing with insurance red-tape, and dealing often with people on the phone who don't care whether we wait a week or two months has cause lots of obstacles to getting her help in a timely fashion.  Lottie has been ignored and pushed aside for five years.  Now that she's home, she has a family to fight for her.  Her family isn't going to be passive about her needs.  We are doing everything we can to get her assistance to thrive!

Through all of these appointments, phone calls, and literal headaches (I've had too many), we have started back homeschool with our other four children.  They have been very flexible starting and stopping class for appointments and phone calls for their sister.  They haven't complained about quickly warmed up meals because our day gets so long or because Mommy is tired with a headache at the end of the day.  Because of our travel and adjustment period we will be doing homeschool at least a few weeks after all the other schools let out for the summer.  But they complain very little and have great attitudes.  They are just happy Lottie is now with us and make the best therapists and new best friends for her!

Lottie is still very fearful about many things.  One of the most difficult things is her fear of our dogs.  They are very gentle with her, yet she sees them as monsters.  She panics and screams whenever she sees them, even through the window.  Getting in and out of the house to the car is a dramatic event because they are always there waiting to see us.  Taking her outside to play takes coaxing because she doesn't want them near her.  We hope this phobia settles down as she learns to trust them to not knock her down or hurt her.
She's also fearful of new places.  She has gone into too many doctor's offices since coming home.  If it isn't for her, it's for me, the kids' dentist, or a brother's check-up.  She has to come to them all, because she can't be away from a parent for at least 6 weeks for proper bonding (we take the advice of the adoption professionals).  She is petrified of being at appointments and now cries when anyone in scrubs or medical attire is in a room with her. Going to church after being home two weeks was also very uncomfortable.  As much as our church family has wanted to meet her and love on her, she doesn't want to be touched by strangers.  She is comfortable giving them a high five and will smile for some people or wave to them.  But she watches every new person very carefully to make sure they aren't dangerous.  Her walls go up everywhere we go.  We know with time the walls will start coming down and she'll let others into her world.  Everything is still very new and scary.
First Sunday at church

On top of all of these new adjustments with Lottie, we have had issues with other personal things involving our home, like a busted pipe discovered after a very high water bill coming in the mail, issues filing taxes, getting multiple estimates on needed work on our home this spring, designing and constructing an adapted play yard in the rain and mud for Lottie to play in, etc.  I have had personal health issues and lost my practitioner since returning from China, causing a hurdle of trying to get needed mediation from another one when there have been delays, cancellations, and difficulties getting someone else to see and evaluate me.  Our dropped off dog we rescued at Christmas completed heart worm treatment only to have a false pregnancy (hormones going crazy) and fainting spells causing the need to go back for treatment for her weak heart, causing more trauma for Lottie (imagine her riding in a van with a dog panting behind her, then going into a small room to watch the dog be examined- it ensued with one hour of crying and screaming).  We are trying to restart our International student ministry after taking a break for our adoption and are having difficulty getting out to meet students and connect with the new ones.  Josiah just got a major dental appliance installed and needs help adjusting to it.  And then I am still trying to recover my lost new phone from the airlines- it has photos and video on it from our trip that can't be replaced, especially photos and video of the orphanage that may help the orphans find their forever families.  In the meantime my old phone gives lots of issues. We are also still working with Lottie's orphanage to get the orphans advocated for and send them some special toys and blankets.  I am trying to get everything regulated to be able to return to working my part time night shift job as a supervising nurse as well.  So far I have been unable to return when asked to help fill a shift, but need to very soon.

We love having Lottie home.  It is such a blessing.  But hopefully by this honest description of our lives right now you can understand more what life is like for our family now.  It is more than just taking home a healthy newborn baby.  Adopting an older special needs child takes parenting to a whole different level.  Adding a fifth child, especially a child who requires much time and patience, adds a great deal of stress.  Reminding myself each day to breathe, to not beat myself up for being weak, to take each little success, each accomplishment in our day as a celebration, keeps me smiling and thankful.

We are in love with our new daughter.  I don't regret or look back at our decision to adopt her for a moment.  Please don't try to read between the lines to think we were shocked or taken back by her special needs.  We came into this adoption knowing that Lottie would have challenges, and God doesn't make mistakes when He calls a family to adopt.  We do, however, need support and encouragement.  Facebook comments and likes are nice, but to be honest, prayers and being hands and feet to our needs are much more effective.  If you are wanting to be a blessing, please just jump in and offer.  If you live a distance away, praying specifically for needs to be met for Lottie and the rest of our family will be such a blessing to us. A big weakness of Kris and mine is we want to do everything ourselves.  It is humbling to say "we need our village".
 But if God is leading you to meet a need, please let us know.

We thank everyone who has welcomed our daughter into our family.  Yes, she's a fifth child!  No, she's not any less special or should be less celebrated than our first, second, third or fourth.  Our quiver is full, and our hearts are too.

1 comment:

  1. Tonya, I attend a very small church, but we place emphasis on prayer! We have a list on our bulletin and all of us diligently pray for these people! Some on our list we do not even know personally. SO YOU ARE IT! We'll be specific for your family beginning this week. Thanks for your blog.