Neurologist’s office called…

I had resolved that as long as my baby was “here” mentally and can interact, smile, laugh and look in my eyes, nothing else matters.  After everything we’ve been through, walking really is the least of our worries!

Then, the APRN from our neurologist’s office called yesterday to discuss.  Basically, he told me that the PT should have kept his mouth shut.  LOL.

They think Zane is doing amazing and there is no reason to believe that he will have trouble.  Again, no one can predict the future either way, but that sure made me feel better!  🙂  I’m so glad they took the time to call me.  (I do wish they had called the day before, but still, I’m glad they got back to me!!!)


I know I  haven’t updated in a while.  I keep starting posts and then end up getting distracted and saving them for later.  Maybe I’ll get around to finishing them and posting them on their appropriate dates!

For now though, I just need to vent.  It was one of those roller coaster days.  I had rather hoped we had gotten beyond those, but I guess that’s not how life, or I.S., works.

It started off great, despite the crummy, rainy weather.  Then the physical therapist arrived and we started baby Z’s therapy.  Our PT (physical therapist) has been telling us for a while about the lack of baby Z’s tone.  But, there has been a remarkable difference in baby Z’s muscles over the last couple of months.  So, I inquired.  Apparently, all this time I did not realize that when a PT refers to “tone”, he doesn’t mean toned muscles.  We had a discussion, and the PT tried to explain to me what “tone” is, but I wasn’t getting it.  Then, he said “With Z’s low tone, I can’t tell you whether or not he will ever walk.”

It was like I was punched in the stomach.

He told me about Hypotonia, and how it’s a diagnosis on it’s own, but it usually related to some other pretty serious syndromes.

So, he left and of course I hit the internet, where I read about cerebral palsy and muscular dystrophy.  Then I cried.  I have been on such a high, since I thought his therapy was going great and that he was progressing so well.  I had to get ready for an appointment, but, I just stood in my room immobile, in a daze.  After everything we’ve been through, it shouldn’t have been as big of a blow as it was.  But, I thought we made it through.  I thought we made it to the other side.  I have a stack of [{late} New Year’s cards on my table ready to be sent out that explain our 2012 miracle.  So it felt like a serious blow.   I thought he had the chance to grow up like any other little boy and do anything he wants to do, and be anything he wants to be.

Of course, my husband is out of the country and unavailable, the neurologist didn’t return my call, and my mom didn’t answer the phone (I had already talked to her earlier in the morning).  Pity party for 1.

But, then I remembered all the moms on the forums I belong to who have babies who are still having hundreds of spasms a day or the ones who live somewhere where they can’t get the proper treatments for their babies, or the babies who needed brain surgery.  Then I remembered us just a few months ago.  But, now, our baby is back.  He smiles.  He giggles.  He looks lovingly into my eyes.  He rolls over, and over and over to get where he wants to go.  He can sit for a minute or so and it’s getting longer every day.  He is getting close to crawling.  He is really making amazing progress.  He IS my miracle baby.

So, while I will take professional opinions into consideration, I will continue to BELIEVE in my baby.  I BELIEVE he can do anything he sets his mind to.  I BELIEVE he will walk.  Maybe it won’t be on the typical time table.  Or, maybe it won’t be at all.  But, that’s okay too.  Because he is my sweet baby and he is LOVED.  No matter what.

So, it’s been a long, crazy day, but I choose to go to bed smiling through HAPPY tears.  I am truly thankful for a smart, strong and handsome baby whom I love beyond measure.