The Time Has Finally Come

Tomorrow is the day we take our baby to see a Developmental Pediatrician for an official evaluation.  The waiting list was only, oh, four months long.  But we are seeing one of the top specialists in the state, thank you very much.  I just wish insurance could tell me whether or not this will be covered!

My son Percy, who turned 2 in May, has severe speech delays, some sensory integration difficulties, and displays signs of being on the Autism Spectrum.  We struggled as to whether or not to see a Developmental Pediatrician OR a Pediatric Neurologist.  We ended up with the DP because of the group he was in AND we could get a concurrent appointment with a Speech Pathologist.  We have to travel an hour to get there, arrive half an hour early, and will be there until approximately noon.  I am anxious as to how Percy will do in this environment, although I am anticipating it will be exceedingly kid-friendly.  But the last time we had to wait at a Doctor’s office it was meltdown central.  (OH, yeah, did I tell you I thought he might have broken his leg last week? Good times.)

I called back in April to get this appointment.  Big brother Thomas could not get in until OCTOBER.  These people better be good!  I was wrestling with whether or not to take Thomas and was considering cancelling his appointment because he was doing so well and was becoming less compulsive.  I even had TWO chances to take a cancellation and get moved up but I declined, thinking it was not necessary.  Then all of a sudden the past month he has regressed and his issues are now MORE disruptive than Percy’s (See “Can you get rid of me?”).  In a brief visit recently with my brother he said if I had asked, “Which one of my children do you think is on the Spectrum?” he would have said Thomas.  I was kicking myself for not taking an earlier appointment, but luckily one just came up the end of August.  It turns out no one can go with me so I will be doing the hour long drive and many hour wait ALONE next week with a 3.5 year old.  We’ll see how that goes.

We cannot get a straight answer from our insurance as to the extent of Percy’s coverage.  NO ONE KNOWS.  How is that possible?  The Doctor we are seeing is listed in the section of “Specialists” so hopefully we are good.  But we also were only approved for a certain amount for OT/ST services and I don’t know if that amount is for ALL developmental delays treatment total.  We may not have any money left to cover this, and it may be we go there and are not covered.  Frightening.  But my husband and I agree this is worth it, so we are still going!  We will pay for it somehow…

By the way, I have known about this appointment for over four months now.  So ask me if I have done the paperwork yet.  NO.  I am just now thinking, “OH, I guess I should call my OB and get a copy of the records that detail the knot in Percy’s cord at birth.”  One day’s notice.  They are going to LOVE me.    In case you are wondering why I think that is important- a week or so prior to the birth of my son I noticed he was moving less. I was told this was normal due to gradual descent into the birth canal, but I was still nervous.  Fetal-non-stress tests seemed to show no problems.  Then on his due date he moved only once in over two hours so I called my doctor and went into the ER even though was Sunday (Mother’s Day!).  I followed my instincts.  Good thing.  Turns out I was in labor, and the whole time his heart rate was steady but strangely non-responsive (that is not good).  Halfway through labor I spiked a fever and his heart rate skyrocketed.  They quickly did a C-section and when they took him out were stunned to find a knot in his cord.  If I had labored at home and he had descended it is possible that knot could have tightened more. I thank God I followed my instincts that something was wrong, but I still wonder about that last week of decreased movement.  Did my son suffer from a diminished oxygen flow and that is why he has speech delays?  We may never know.

Maybe tomorrow we will start getting some answers.  Why does he struggle so much to talk but is a wizard at puzzles?  Why is he such a picky eater?  Why does he sometimes not respond when I call his name, yet other times he greets me with a huge hug and smile?  Why does he get so angry and bang his head on the floor?  Why won’t he eat his vegetables?  Oh wait, I know the answer to that one!

One more day until we go.  I woke up this morning feeling anxious.  I didn’t know I was worried about this.  Funny how our bodies can tell us things about how we feel that our consciousness somehow misses.  I have knots in my tummy, but I am also excited.  I want to finally get some answers.  I regret that we were not able to get him in sooner so that they could see the pre-verbal Percy.  He has had a huge spike in development the past few months and I guess I am worried that they will look at him and say, “Why is he here?”  But I know in my heart that something unusual is going on inside my son.  I just hope the doctors can tell us tomorrow what that is.