Friday, September 16, 2011

My Special Guy

Greetings, all!  Kerry here, feeling guilty for not writing all week.  But y'all got lucky-I have a cold, and feel down enough to want to do any of the many things around here that need doing.  So I'm blogging.  Aren't you all just so lucky?

Anyhoo, I had recently posted on my FB page that my Little Dude will be starting speech therapy and early intervention therapy next week.  I got a lot of responses, and most of them were something like, "Say what?  He needs that?"  People seemed kind of surprised that I was excited about it.  After seeing all that, I realized that I had never set down the story of why this is a big step for us.

When the LD was 3 months old, our pediatrician at the time had us take him for an MRI.  His head growth was in the 99th percentile, while the rest of him was squarely at 50%.  The MRI came back showing a significant gap between skull growth and brain growth, and the pediatrician diagnosed the LD with hydrocephaly.  The pediatrician, being an older, kind of crabby gentleman, immediately gave us a worst-case scenario.  Our Little Dude would have significant speech and motor delays, requiring intensive therapy.  It would be something he would struggle with for the rest of his life, which, by the way, would likely be shortened by this.  He told me all this over the phone.  Needless to say, I was slightly hysterical.  I can remember the Big Dude and I sitting on our bed, LD laying on it between us, as we cried and tried to make sense of it.

After the initial shock wore off, we were on the phone with the pediatrician, demanding more information.  He had us come into the office after hours so he could show us the MRI.  He focused on the need for monitoring and therapy in the near future.  We would have MRIs done every 3 months.  We had a list of symptoms to watch for.  We were connected with our local Help Me Grow center, so we wouldn't have to wait for services when the predicted delays began.  He told us he suspected this was caused by a scare we had when I was in my first trimester, where I had begun to bleed and had to go to the ER to make sure everything was okay.  I don't think I've ever felt guiltier for anything in my life!  And while we did feel more positive after that visit (except for all that mommy guilt), all we could do for our son was to watch and wait.

Big head, little body, happy baby.

Our day to day lives went back to usual.  LD grew and thrived, meeting all of his developmental milestones right on time, except for lifting his head and rolling over.  That was dismissed by our neurologist as normal-how could we expect that tiny body to lift that giant noggin?  But LD was happy, and our biggest challenge at that time was finding shirts that would fit over his head.

As time went on, and we had more MRIs under our belts, the unexpected happened.  His brain growth began to catch up to his skull.  The excess fluid that was filling the gap was being harmlessly absorbed.  At first, we were told this meant a shunt to drain off the fluid wouldn't be needed.  Further consultation with the neurologists took place.  We met with a new specialist.  BD and I had our heads measured, our family histories taken, and were quizzed on Jeffrey's development.  All this resulted in a changed diagnosis-benign macrocephaly.  Or, as the specialist put it, "Congratulations!  He just has a big head!"  She then asked to use his case history for a presentation for the state's neurological society, as well as for possible future publication.  We giddily gave permission.  We knew we weren't out of the woods yet, but we were just so relieved.

Life went on, as it does.  We moved.  LD learned to walk, then jump.  We both started new jobs.  Holidays were celebrated, cars broke down.  LD colored on the windows, learned his letters and numbers, and became Murray Wiggle's number one fan.  MRIs happened, the results were always good.  As of today, the only issue he has is difficulty taking all the words he knows and using them to communicate with others.  We had him evaluated for therapy services just a few days ago, and I was almost sick with anticipation.  I was so afraid that there would be more wrong with him than we realized.  Thankfully, all they want to work on is his speech, and then give him a bit of a boost with socialization skills-it's tough to make friends when you can't communicate with them.  They told me the results, and I was just so grateful.  I feel like we've dodged a bullet with him.  And I know this all may sound shallow-compared to some of the things other children have to cope with, I feel like I'm making a fuss over a splinter-but I can't forget the fear and anguish I felt when I was told that initial diagnosis.  He's my only child, he will always be our only child, and hearing that it's just a speech delay is almost like a gift.

Next time on V3, Kerry will refrain from long, serious posts, and will discuss homemade Christmas gift ideas!

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