Carlos and Maria - an Update

I wanted to give an update on how things have been going with Maria and with Carlos.  We've had quite a journey with these little ones these past couple of months.  First of all, they are precious!  My heart tonight was just filled with so much love for both of them.  We had such a fun, relaxing, and enjoyable dinner together, and it just felt so right.  This family of four that God put together...wow...it's amazing.  He knew from the beginning of time what our family would be.  And what an awesome responsibility that is for us as parents to reflect upon.  God specifically chose Kevin and I to be the parents of Carlos and of Maria.  Out of all of the people in the entire world, He chose us.  Who we are and who we will become will impact these two little lives like no one else will.  Please God, give us your wisdom and strength.  Guide us as we partner with You to teach and encourage and discipline and love. 

So as you know, Maria was diagnosed with Agenesis of the Corpus Collosum, which means that she is missing the middle section of her brain that connects the two hemispheres together.  This is a pretty rare condition, and the effects of it can be very severe impairment or, as we're learning, no impairment at all.  We said yes to God to welcome this little child into our home not knowing what our journey with her was going to look like, not worrying about the potentially frightening realities of parenting a child with moderate to severe special needs.  No parent knows what their journey with their child will look like, yet we did know some possible scenarios regarding Maria based on what we've read about most kids diagnosed with ACC. 

And I think that's the key word right there: diagnosed.  Most kids who are diagnosed with ACC were diagnosed because there were problems or indicators that something wasn't functioning/happening like it should with typical development, and so they underwent testing and an MRI to determine what was going on.  So the infants and children who were showing signs of difficulty are the ones with ACC who are most often diagnosed.  What we've found out recently from several doctors is that there are thousands of people walking around this earch without their corpus collosum and don't even know it!  There have been many, many cases where a person went in for an MRI for something later in their life and through that process found out that they have ACC.  They have been functioning normally their whole life and no one knew or would have suspected that they were missing such an important part of their brain!  Amazingly, we think that's what's going on with Maria. 

The U.S. Embassy doctor in Colombia whom we saw in order to be allowed to exit Colombia and come back into the States said that he would never have known or suspected that she has ACC if I didn't tell him or if he hadn't read it in her medical file.  He said that she is functioning normally and he has no concerns for her health!  Although this was good news and confirmed what we were seeing in her while with her in Colomiba, we still didn't know if that was completely true or if that would remain true of her.  We took her to the pediatrician's office about a month ago though, and he said the same thing!  He said that he would never have ordered an MRI done because he never would have suspected that there was anything atypical about her.  He did want us to have her MRI scans over-read by a pediatric radiologist at DeVos Children's Hospital though, just to get their perspective and expertise.  They confirmed that she is missing her corpus collosum, but also said that there are cysts in her brain and that there is something not quite right with her optic nerves.  Our pediatrician said that he wasn't concerned, but wanted to refer us to a pediatric neurologist anyway since there are several things going on with her brain and the neurologist would be the best person to check her out to see what if anything is going on. 

So we went and saw the pediatric neurologist two weeks ago.  Once again, he confirmed that Maria is developing well, is alert and bright, and he doesn't forsee any problems with her due to her ACC.  He can't make any promises of course, and we have to wait and see what she'll be like regarding academics once that comes into play for her.  But for right now though, she is doing very well! 

He did say that although she is doing really well right now, there are three areas of potential concern in people with ACC that we all need to be aware of.  One is seisure activity.  People with any brain malformation are at a higher risk than the general population for having seisure disorders, so we just need to know the signs and keep an eye on her.  The second area of potential concern is optic nerve disfunction (Disfunction is my word, not his.  He had a much fancier term that I can't remember!)  He is referring us to a pediatric opthamologist to get her checked out since her optic nerves are a little on the small side.  (Although he did say that it could just be the angle of the MRI scan of that part of her brain that is making them look a little smaller, and that possibly they are not smaller at all.)  The third area of potential concern is regarding her pituitary gland.  Since the pituitary gland is located in the center of the brain, people with ACC often have trouble with their pituitary system.  They either hit puberty really early or really late or not at all.  So, he is referring us to a pediatric endocronologist as well, just to get a baseline on Maria and so that we can establish that relationship now and can keep an eye on things as she develops. 

Although going to all of these specialists sounds like she is unhealthy and has a lot of challenges to overcome, she is actually doing great and seeing all of these specialists is just to be proactive. 

We had her evaluated by early childhood specialists in our district last week and they said that she is functioning at about 19 months old right now pretty much across the board.  We knew she had developmental delays before we got her, and that many children who have lived in an orphanage have delays.  They were not concerned with her development though, and feel like she will catch up to her same age peers over the next couple of months.  Already since she's been with us she went from speaking no words spontaneosly to having a vocabulary of around 25 words and counting.  And she is a fast learner!  If we show her how to do something once, she has it.  It's amazing.  She's like a little sponge!  :) 

Maria is sweet, funny, silly, bright, and curious, and we love her very much!

Carlos has been having the hardest time out of all of us with this transition of becoming a family of four.  He is struggling with some deep, intense emotions, and so we have started seeing an attachment and family therapist.  This was our third week, and already we can tell that this was a very good decision.  Carlos is very open with us about his thoughts and feelings, but he opens up to Mr. Ellis even more so, and it's so helpful to witness.  If we look at what the past few months have been like for Carlos, he is doing remarkably well and has grown so much.  Yes, there are still times of intense emotions from him and times of difficulty and challenges with him, but things are so much better than what they were the first couple of weeks in Colombia.  Praise God for that!  Please pray with us that he continues to open up and share during therapy, and that he will be open to hearing the truth about who he is in Christ, who God made him to be.  (One of the issues he is struggling with is identity, as most adoptees do.)  And please pray that Kevin and I will have open hearts and minds and ears to hear what Carlos is really saying through his words and actions. 

Carlos is doing really well at school, and is continuing to amaze us with his capacity to learn in two languages!  Last week he read part of a book in English, and part of a book in Spanish!  And he is writing complete thoughts in Spanish, two sentences about the same topic.  In Kindergarten!  We are very proud of him. 

Carlos is a thoughtful, inquisitive, curious, sensitive, kind-hearted, funny, quirky, creative boy, and we love him oh so very much!

What a gift God has given us in our children, and what a journey we are on.  We thank Him and praise Him through both the good and challenging times.  We shall see what unfolds for our family as we try to just take life a day at a time.  :)