Therapy, therapy…oh, and did I mention – therapy?

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Angel had her go-round with the Developmental Pediatrician on Monday. Avoiding discussion of the horror of a day surrounding said appointment, I’ll get right into the actual facts and (lack of) diagnosis! The short of it – we may never know what causes our little one to struggle.  It may be that she was born so early, or just a quirk in her brain that makes her crooked physically and mentally.  However, that won’t stop us from a) looking for a cause and b) getting her all the help she needs. To that end, the Ped did see her unevenness in her gait (we walked and/or ran down a long hall to display), and tone.  She again listened and heard all I had to say on everything we’ve been through the past couple of years with her.  She gave advice and took a good look over her, just as she had with Riley. Her solutions here were a little more complex, but not by much. 1. We are doing an MRI on her brain.  Taking a good hard look to be sure that there is nothing specific or noteworthy that could have caused this. 2. We are doing a full-run genetic test. AFter a pre-approval by her dual insurance plans, of course.  Why are we doing these?  Because the ped recognized that almost as much as we want to learn the HOW’s of Angel’s issues…we also would like to know WHY’s.  She said that while it is likely just her early birth date, we should exhaust the remaining bit of question. And onto the HOW’s… 1. Restarting Speech Therapy 2. Restarting Occupational Therapy 3. Having a psychological exam done to determine need for Behavioral Therapy 4. Returning to the Feeding specialist for  monthly visits 5. Restarting Physical Therapy All of this will be done at Riley Hospital, and all should be covered by insurance (if not primary, then secondary) as part of her diagnosed issues.  Thank goodness for Indiana’s wonderful Special Needs insurance (now if only we could get Riley qualified for it *sigh*)…it has saved us more than I can ever say. And that is where we stand now.  Therapy, therapy…and more therapy.  I’ll be doing a bit more traveling once it all gets started…but if it helps, it’s all worth it. Read more »

Truncal Hypotonia-In Layman’s Terms

Today in email I was asked by a mom with a new diagnosis of Truncal Hypotonia to explain it in layman’s terms for her.  She’s new to all of this and is frightened – and I remember that feeling well.  It’s been ages since I did a Terminology Tuesday, and today is not Tuesday, but I thought it would make a great post, since I display clearly on my site that Angel has this and what it is may not be clear.  I’ve already answered this directly to that mom in email, but I’m making a post now too 😀 Hypotonia is a muscular condition.  It means that the muscles do not have the tone of normal muscles – they aren’t as strong or flexible.  This is often characterized by a rigidity.  In our case, even changing a diaper caused discomfort for Angel. She had Torticollis (definition on Tues.) as a baby, then her arms were stuck in the airplane reflex (arms raised tight and bent at her sides) until we finally got her crawling – and even then we could not get her to use her left arm to reach for anything.   Truncal means the torso.  The hips/stomach/chest area is the weakest. The trunk supports us in just about everything from sitting to moving and walking. Angel’s hips and chest are her weakest area, most especially on the left side.  I hope this helps!  I’m off to research another disorder to gain an understanding of it before I email this mom back!! *~* Read more »

by Sarah Cass

Multi-published author. Mom of 3 special needs kids. Wife to 1 good man.
Redefining Perfect every day.

I blame myself…

Which is really hypocritical of me because I constantly give Archie grief for blaming himself.  It isn’t his fault…and it isn’t my fault…and our brains know this…but our hearts bleed.  His heart bleeds because Brandon was the ‘perfect’ child.  He was never really sick (a minor bowel issue until 3yo, but otherwise) – Brandon is neurotypical.  ARchie is not biologically his father.  Our two special needs children are his biological children.  He draws the line of coincidence and though his head tells him that it isn’t his fault…his heart aches and bleeds thinking it was somehow his fault – his genes that did it. For me, it’s an old vice.  One that still haunts me…and one that I abused when I was pregnant…not with Brandon, and not with Riley…but with Angel… I smoked until I was five and a half months pregnant with her.  In my (very weak) defense I hadn’t the foggiest idea I WAS pregnant (seriously I REALLY had no idea…both me and my OB were shocked)…but I was, and I did.  I had my first cigarette at 11.  At 16 I really started smoking – and started hard with reds.  I smoked off an on for years.  I’ve always had a knack of just deciding one day that I’d quit and that would be it – for months and years at a time.  When I started drinking (at 18), I’d almost always have at least one cigarette when I drank – which worked since it was only once every few months.  But I was a horrible social smoker…when others smoked, I joined.  Working in food service – a LOT of food service workers smoke…so when I started waitressing after Riley was born, I started smoking – like a frickin’ chimney.  Truth be told, with all three of my kids I smoked right up until the day I found out I was pregnant.  Brandon I stopped as soon as I saw the test – and never looked back, in fact they made me sick.  With Riley, I quit before I knew I was pregnant…they just made me nuts, so did alcohol (not that I was ever addicted to that).  But when I got pregnant with Angel, I had no idea I was pregnant.  I was using three forms of birth control (four if you count the new-parent exhaustion-created near-abstinence).  I was working at Bob Evans (yum) and smoking like a chimney with my friends and coworkers.  I’ve always felt guilt about it – but pushed it aside as best as I could.  But when I hear the doctors say “Something happened neurologically while she was in utero.  Something minor, but enough to cause this…”  As they have since we first started looking for reasons for her left-sided weakness.  Every time I hear “neurological event” and “in utero” – I blame myself.  And my heart bleeds.  And bleeds… And tonight…my heart bleeds…and again I blame myself… Read more »