The New Normal

Hello friends,

Matt here.  It's been a long time since our last post.  There are many reasons for the gap between posts, including lack of time.  But perhaps the biggest reason we haven't written in so long is that we didn't know what to write.  As we have continued to search for diagnoses, medications, and therapies to help sweet Pete, we didn't want him to become his special needs by continuing to write about his challenges.

So, here's an update on life with Petey since our last post in July 2016.  We have had appointments with his pediatrician, neurologist and neurosurgeon, and he had an MRI.  A few months ago we finally received a formal diagnosis:  microcephaly.  That is a scary word, especially if you're aware of the Zika epidemic which has seen the birth of many children with abnormally small heads which results in significant and potentially life-threatening complications.  Petey's microcephaly is classified as "moderate".  Children in the mild range typically suffer no ill effects and develop normally. Children in the severe range often suffer seizures, have impaired sight or hearing and, in the worst case scenario, basic life functions are threatened.  But the moderate range has a wide variety of outcomes and we don't yet know where Petey will end up.

He has regular occupational therapy which has helped develop his motor skills significantly, although he still has a long way to go.  We stopped speech therapy several months ago due to a lack of progress but will start again in May, in hopes that he has developed enough since then to try again. He can do a few baby signs, but his fine motor skills are so limited it is hard to differentiate between several signs beyond the obvious like "eat", "drink" and "dog".  Petey has been attending 2 morning-a-week preschool and we have been blessed with tremendously accommodating teachers.  But Petey will most likely be home with Allie next school year.  He won't be ready for 3-year-old preschool and there just aren't good special needs options available that are appropriate for Petey at this time.  In addition to speech, OT and possibly behavioral therapy, we will also schedule classes like gym and music to give him opportunities to socialize.

Perhaps the biggest challenge with Petey remains his ADHD.  He has been on medication for several months and that has had a positive effect on his behavior. But this particular med is likely not the long-term answer and we are not-so-patiently waiting for an April appointment with a developmental pediatrician. We hope that doctor will be able to prescribe different meds that better meet his needs.

As things stand now, when the meds are in effect, his attention span is okay. But when it wears off, watch out!  Frenzied may be the best word to describe him when he is unmedicated, typically first thing in the morning and again after 4:30 p.m.  He will grab anything and everything he can and dump whatever he can get his hands on.  He simply cannot focus on any one thing for longer than 2-3 seconds when he is not medicated.   We have to follow him and watch him like a hawk, or just give in and spend hours later cleaning the disaster area.  By far, the worst part is that when he gets frustrated he bangs his head on the closest surface.  Walls, doors, floors, concrete driveways, bathtubs, streets, chairs, tables...whatever he can reach.  It is extremely difficult to watch him hit his head before we can get to him.  We have learned to watch for the signs and to snatch him up and soothe him before he hits his head, but sometimes you just can't get there fast enough.

And yet, despite all of that, he is the sweetest and most gentle boy.  Some children with severe ADHD are prone to rages, but not Petey. He may be frantic and frenzied at times, but he never hits, bites or kicks.  He has never once lashed out at anyone else. He also has a great smile and the most infectious laugh.  He has a tremendous sense of empathy and will cry if another child cries first.  He also has a way of making people happy. Cashiers at the grocery store, people in line at the post office, friends at church...he just has a way of making people smile because he's so darn cute.

So, what does the future hold?  We don't know.  We desperately hope and pray that Petey will learn to talk, but we know that is not likely to happen in the near term.  We hope that the new doctor will be able to prescribe something better for Petey. Our pastor recently preached a very challenging message that really changed my perspective on a lot of things.  He talked about being thankful for everything, including the challenges, rather than only praying that God would get us through or take those challenges away (which is still okay to do, too!). By being thankful for the challenges, whatever they may be, it has helped me to focus on Petey as he is, not forever wishing for Petey the way I'd like him to be.  Nor consumed by bitterness and resentment for whatever (or whomever) happened to him before he came to us and that might have caused his issues. Or as Allie says, not to see him as a 4-year-old or a 1-year-old, but simply to see him as Petey, who we love dearly.

We used to think that if we just got Petey home, loved him, fed him well, and made sure that he had appropriate therapies and support, that he would catch up. We've seen many international adoptions where the children thrive when they return home with their forever family.  And maybe Petey will too, but we also now realize that it won't be as easy as we had hoped and that this, for at least right now, is the new normal.  What we hoped would just be a season of life may last far longer than that.

This might be our last blog post, it might not. Only time will tell.  But I wanted to share with you where we are and ask for your continued prayers for our beloved Petey.  Thanks for your love, prayers and support.

-Matt