Friday, July 19, 2013

Unexpected Vision

Today was Mercy's first Ophthalmology appointment.  I would say she did great all things considered, but we did have a few meltdowns, however, if I were her I probably would have acted the same way or worse.  We left the house at 6:30 this morning so just having to be woken up from a deep sleep in the early a.m. should have been enough to make one grouchy.  But she was all smiles and even fell back to sleep for a bit on the car ride to Philly. 

Mercy was examined by two resident doctors as well as Dr. Mills who is her assigned ophthalmologist.  She also had a Teller acuity test done.  Overall it was a really great visit.  She had a few meltdowns with nurses and doctors touching her eyes, shining bright lights in her eyes and probably the worst meltdown came when they put the dilation drops in her eyes.  She had to be restrained for that and it did not go over well.  In the end we are very happy with this doctor.  On a side note, I will not let resident doctors be involved with examining her again in the future.  I will only allow them to observe the doctor's exam.  It was just way too many people for her to deal with and way too many times of having a bright light shined in her eyes.  I know resident doctors need the experience, but they will have to find someone else's kid because mine is off limits.  I didn't really realize that these resident doctors were only satisfying their curiosity and education and the "real" exam came from her actual ophthalmologist, yet they all examined her in the same way.  So she basically got examined more than once today.  Wish I had caught on sooner so I could have put an end to it. 

Most of what the doctor reported today was very encouraging news.  Mercy's acuity tested 20/190.  To be diagnosed as legally blind your acuity needs to be 20/200 or more.  For us this was an answer to many many prayers.  I want to be sensitive about this because I know many families who have children with Albinism that are legally blind and even a few adults who are as well.  And this doesn't change their quality of life, they actually live very normal healthy thriving lives and do many if not all the same things as children with 20/20 vision do.  If Mercy had tested as legally blind we were completely prepared to deal with whatever that would mean for her, actually, we were expecting it.  I think it is safe to say any parent wants the best for their child so I wholeheartedly rejoice that she is not.  But this doesn't change the fact that the girl has some serious vision impairment, and it also doesn't change her eyes sensitivity to sunlight.  My prayers for Mercy have always been that her vision would be on the better end of the scale.  Whatever the case, in my heart I prayed and God has answered and I want to give him the glory.  Her vision is just above the mark with an acuity of 20/190 without correction.  She is getting a pair of prescription glasses and we are hoping that will improve her vision a little bit more.  As for her light sensitivity, we will also get her prescription sunglasses because the transition lenses do not tint dark enough to give her the best protection when outside in bright sunlight.  The down side to this is that insurance will only cover one pair of glasses and we will be purchasing two.

I can't say enough about this sweet little girl.  She is defying all odds.  When we accepted her referral and chose to adopt her we never imagined we would become the parents of this feisty, sassy, extremely smart little girl.  But she never ceases to surprise us.  Everyday she learns something new and I absolutely love that I get a front row seat to watching her grow, thrive, develop and blossom.  It is a blessing beyond words.  

After her appointment we then headed to the third floor for her blood work.  She SCREAMED.  Everyone in the waiting room could hear her and a few "awes" were whispered amongst the crowd.  We will not hear the results of that until next week.  Please pray that her iron levels have increased.  Our next stop is genetics on August 2nd. 

Happily waiting for her exam. 

Snacking in between waiting.

Mommies turn to sit in the exam chair.

These animals moved and made noise when the doctor pressed a foot pedal. 

Playing in the waiting room waiting for the eye drops to dilate her pupils.

Daddy playing pirate with her headband (a.k.a. desperate entertainment)

One of a few meltdowns.

And another meltdown.

Pooped out is an understatement.  The arm she is holding out is the one they drew blood from.

Getting fitted for her new glasses.

Saturday, July 13, 2013

Two Months Home

So I haven't written in exactly one month.  I guess that alone shows how busy it has been since our return from China.

I want to faithfully update this blog, but then I remember I'm human and not Mrs. Incredible or Wonder Woman or even a great manager of my once a month is what you get, for now.

As for what the past month has brought in changes, well there are many that I want to mention and probably a few I will forget to mention.  But I'll try my best because she continues to amaze us and I want to document her progress along the way, even if only once per month.

So today marks exactly two months to the day since we held Mercy in our arms for the first time.  I still am nothing short of amazed at this little girl and how much we love her and how perfect she is for our family.  Trusting in the Lord has never been an easy thing for me, especially as He called us to adoption and specifically this little one.  But I'm hear to tell you if you struggle to trust in God take that step of faith that He is asking of you, whatever that may be, and watch and see how great and mighty and trustworthy He is!!!  It will change you and it will change the way you see God and it will change your relationship with God.

As for little Miss Mercy.  She is defying all odds.  Here are a few things that she has accomplished in the past four weeks since my last update.  She is speaking more words and starting to sing a few songs.  She is also putting three sign language signs together such as "more cookie please."  She has added a few new signs such as help, book and open.  That brings her to a total of eight, that equals a new one a week!  Signing has definitely been a great from of communication for her to get her basic needs met.  She has begun speech therapy and the therapist has encouraged as to keep adding more even while working on her speech.

Mercy is walking!  She is still wobbly and falls, but when she wants to get somewhere she chooses her feet over her knees these days.  She is more willing to walk outside on uneven surfaces too as long as she is holding your hand.  She has finally stepped barefoot in the grass, but she will not sit down and cries if she falls.

Mercy is SLEEPING THROUGH THE NIGHT!!!  This is by far one of my favorite milestones.  We have an occasional night with a night terror or interruption, but they are few and far between at this point.  She is also now willing to let Scott put her to bed.  Last month I posted that we transitioned her from our bed to a mattress on the floor.  Well as our little courageous one has become more mobile and comfortable in her new home she has also become a little dare devil.  One morning we woke up to no Mercy on her mattress or any where in our room.  As I rushed downstairs I found her sitting in the kitchen by her high chair.  When she saw me she signed "eat."  That little stinker climbed off her mattress, which is wedges and has a bedrail again the open side of it and she managed to climb down an entire flight of stairs without anyone hearing a peep out of her.  That evening we broke out our pack n' play and she has been sleeping in it ever since.  I am hoping the next sleeptime transition we make will be a big girl bed in her bedroom, but I'm thinking it might be awhile.  So along with walking and sleeping through the night she has also mastered going up and down all steps.

She is playing by herself more often and I am able to be in another room away from her for longer periods of time without her fussing.  She is also doing new things with the toys that she plays with.  She can now stack the rings on her stacking toy and throw a ball.  I know these may seem like puny steps for a 27 month old, but for us (and her) they are huge.  Many of her delays are either stemming from lack of experience and exposure due to living in an orphanage and then there are those that stem from her lack of vision.  We have had a vision therapist from the Overbrook School for the Blind coming weekly to work with us and Mercy.  She has been a wealth of knowledge and has helped us adapt some things in our home, as well as some of Mercy's toys to better suit her vision impairment. 

Mercy has also begun occupational therapy.  This has also been such a great source of help for us.  We are seeing progress in her ability to feed herself with a spoon and fork.  She still has a ways to go, but she is trying.  It is fascinating to learn how a child's brain develops and what seems like something she should pick up rather quickly is taking longer to grasp.  She is lacking in things that I would never have considered like the ability to suck from a straw, scoop up something with a spoon or poke with a fork.  She struggles to just get the spoon already full of food to her mouth let alone be able to scoop the food herself.

I think it is safe to say she has adjusted to her new role of being a baby sister.  She shows affection for all three of her siblings and she calls them by name, gives them hugs and kisses and wants to be where they are much of the time.  She even shows trust in them as they take turns holding her in the pool, at least the two older ones.  And I just want to mention Michaela has such an amazing gift to nurture and tenderly care for her little sister.  I love watching them together and I see in Michaela these little glimpses of a wonderful mother in the making.  Michaela has even changed a few dirty diapers! 

In the past few days we have seen some new things that are telling us the "honeymoon" phase is coming to an end.  Mercy is testing us in just about everything.  She use to eat anything you put in front of her, but as she begins to realize that there are options and there will always be "more" she is turning food down and making it very clear when she doesn't like something.  She is throwing herself down on the floor in little temper tantrums when she isn't getting her way and she is telling us NO when she doesn't like something.  She is testing boundaries within the house and getting into more.  I will say that her tempter tantrums are super super cute and make me laugh, sometimes out loud, which isn't helpful.  I think it's partially because of her flexibility.  When she throws herself down her legs nearly do a split as she is face down on the floor screaming.  I'll have to try and video tape it sometime.

I know I have said it before but we really do have an easy job when it comes to loving this little girl.  She is a delight and joy to us and we cannot imagine life without her.  I have had a few very emotional moments in the past four weeks when I think about her birth mommy.  If she cared for Mercy those first 10 months of life before she entered the orphanage then she must miss her greatly because I have only had her in my arms for 8 weeks and I can't imagine a day without her.  I find myself praying for her often and other times I can't let my mind wonder there because it breaks my heart both for Mercy and for her birth mother.

As for continued prayers for us.  Please pray that bonding continues to strengthen and progress.  While Mercy has found her place in our family and will go to any one of the five of us, she still struggles to let us comfort her when she is upset.  I know in my heart this will come with trust and time, but pray for her.  Pray she begins to understand that she doesn't need to struggle with things "alone" because she has a family that wants to help her.  Also pray for her upcoming Opthamology Appointment at CHOP.  It is Friday, July 19th.  This appointment is one we have anticipated because we want to know what her vision really is and how we can best improve it and help her.  Pray that the doctor can get an acuity despite her young age and just that he has some wisdom and understands the visual needs of a child with Albinism.

I will leave you with a few recent pictures.

She put her sunglasses on herself, can you tell?


Playdough fun

Her sassy smirk

No need for words!  I LOVE THESE TWO.

And these two!

Temper tantrum, check out her legs!