From the time our troubles started, from the time we first realized there was just something ‘off’ about Riley.  From the day We realized Angel’s torticollis was more than just a lazy neck and a heavy head.  From the day we realized Angel’s cough was going for a month and showed no signs of letting up. From the first time Angel intentionally injured herself. From the first toys Riley lined up.  Every day, every night, every in between we are aware.  We notice when Angel runs out of steam before she’s played for ten minutes.  We notice when Riley is starting to retreat into her shell. When we’re in danger of a meltdown of epic proportions.  In danger of a night of a screaming, pouting, angry Riley.

We notice it all.

We see it in the every day.

We see it in the little things.

Every action, every reaction.

It’s a part of our lives.  It is our every day.

Then you come along and say “But she looks just fine to me.”  Or “She doesn’t seem autistic.”  And of course the “She doesn’t act sick.”

I know you mean well.  Really, I do.

But I hate it when you say that.

It’s like you’re belittling our every day.

The hours at doctors and specialists.  The hours calming and refocusing an over-stimulated child (longest meltdown stands at 36 hours).  The hours a day hooked up to machines to live every day.  The way I lay awake at night listening to labored breathing. Check temperatures every time we feel a little warm.

I know you don’t mean it this way.  I know you just mean to say that despite their troubles they look healthy and happy.  That unlike other children with special needs it’s not a visible/noticeable difference.

But I hate it.

Just say they’re beautiful.  Say they have a great smile. They look like they’re having a blast.

Don’t contradict what we KNOW.  Riley does have autism (no matter how mild). Angel does have CF, and right now she is sick (and we spend every day wondering just how badly it’s holding on).

It is our every day.

We try to live life beyond our labels – and we only succeed by accepting them and integrating what they mean into our lives.

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.

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…

*****

Today I have a valid reason for my complaining and picking at my Angel’s faults…so does that make it complaining and picking?  I’ll pretend it doesn’t (don’t tell me otherwise if it isn’t…I’m feeling so good about this *G*).

Tomorrow (Thursday) is Angel’s appointment with her new Orthopaedist at the children’s hospital where her pulm is located.  I’m excited, and anxious…worried that I’ll be let down again.  So, in preparation I’m making a list (of compaints) to present to the doctor.  You get the privilege of reading that list   Lucky you, right?

So here’s my best compilation, hopefully I won’t forget anything…

1. PT notes state her spatial awareness is still off – making her a possible danger to herself.
2. PT notes also state she still prefers her right side for balance and strength.
3. PT notes lastly state that she demonstrates bilateral hip weakness.
4. At home we’ve noticed a visible difference in the length/size of her legs. It used to be minor and you really had to look and get her lying perfectly straight – now we can see it from across the room – and her feet are officially different sizes.
5. Could this be causing scoliosis?  It’s genetic in the family, I’m worried that this can make it come on sooner and stronger for her.  My mother has a hump in her back hers is so severe (mine is more minor – thank goodness for dance).
6. Changing her diaper has always been a nightmare, she hates having her legs/hips bent.
7. Now pushing her knees to her chest causes complaint/full blown fit.  It appears like her hips make her uncomfortable.
8. She is showing improvements, but is it compensating improvements or actual improvements?

I’m sure I’m forgetting something…I’ll update as I go…if I remember, or Archie reminds me of something.   Wish us luck tomorrow…we’re going to need it!  I was so disappointed in the last ortho, I’m afraid I’m a bit negatively biased ahead of time.

When you tell yourself daily to call the doctor, to push for a second opinion…but you fear ‘the look’ you know will happen on the other end.  The one that says, “You’re overreacting.”

When your child throws themselves into such an intense, self-injuring, shriekingly horrible fit that she is unable to pull herself out of it?

When the comfort you try to give her leads to pained cries – deep, gut-wrenching sobs filled with tears that tear at your heart – and you’ve never known what caused it?

When the two years of therapy have done nothing to help a problem that only seems to be getting worse, but no doctor seems to think that your fears are justified?

When you think there’s more wrong that they just haven’t gotten a fix on yet…but you have no clue where to start…and the one venue you can think of using could cause you to lose all support you currently receive – or at least have to have it re-evaluated?

When you are faced with watching your child – every day- struggle to be…anything?

Watching her struggle to be just like her sister, but unable to compete in an uneven battle?

When you see her grow tired every two hours, but have to force her to stay awake and still playing so that she will sleep when it’s actually appropriate? 

When you see that the moment she has gotten tired all possible control she had weakens, and her feet turn in, and the clumsy begins, and the tantrums come quicker and stronger?

When you watch her destroy toys and property, without the faintest idea how to stop her?

When not even the trained psychologist is sure how to help with all of her issues?

When your own faith in your motherhood is tested and you doubt your own instincts on whether there is a problem or you’re being a hypochondriac?

You do the only thing you can do.  You sit back.  You watch her play, you give her hugs and kisses when she runs up to you.  You find the amazement and wonder at her intelligence when she surprises you by showing it off.  You see the happy in the smiles she grants you liberally between tantrums.  You note the way she’s like you – dancing at every little bit of music, the way her toes point when she’s at rest, the cheeks, the smile, the crazy buck-teeth, the eyes. 

You remember that you are her Mom.  That in your heart you know the truth.  You remember that your instincts ARE on, and fight for them, and for her.

You take a break, you revel in the love of your little angel…and you fight anew tomorrow to give her every bit of life, love, and help that she deserves.

********

We took K to the Orthopedist. This was on the reccommendation of our Physical Therapist. Currently K is receiving PT for hyoptonia among other issues. She wanted us to go see an Ortho just to make sure that she didn’t need further “Assistance” in overcoming the issues she’s having. (She walks like a chimpanzee, her foot turns in, her left leg is 1/4″ shorter…)

I must say that it was the shortest, most concise appointment I have ever been to out of ANY specialist that I’ve seen. There was no weight taken. No height measurement. We were taken to a room. Five minutes later the doctor came in shook our hands (PAINFULLY strong grip, BTW), and asked us what was going on. He looked over her feet and her legs, asked us to have her walk a bit for him.

After a 5-10 minute appointment he basically said nothing needed to be done. He even came close to saying that PT wasn’t required (HUH?). He said she had Tibial Torsion, and explained how she was compensating for it. He said she’d “probably” outgrow it by the time she was four. If she didn’t outgrow it by then, we’d have to take measures. He also said he believed she’d outgrow her hypotonia.

We can only hope at this point. We were in and out of the appointment in an hour. And while I felt secure that he was knowledgable, I just am not as optomistic after it as I thought I’d be. I still have a gut feeling that her issue goes beyond simple Tibial Torsion…Her hypotonia is truly what worries me…the concern that she won’t ever learn to do things the “right” way…and will spend her whole life compensating. But apparently at this age it’s yet ANOTHER waiting game…wait until she’s four and THEN worry…

Um, no…I’ll worry now, thanks.

But, I will update later with what happens!

***

Also, I know I didn’t get around to the next in the series of the story of me…but I actually stayed off the puter and spent time with DH last night. We watched part 2 of the “Tin Man” miniseries…and I’m guessing we’re going to finish it off tonight. But I WILL try to continue with the next post today after the doctor’s appointment. After all I left off with “CRAP. I’m PREGNANT!!” *lol*

Hypotonia
(as quoted from Wikipedia because I couldn’t say it better)

Hypotonia is a condition of abnormally low muscle tone (the amount of tension or resistance to movement in a muscle), often involving reduced muscle strength.

Hypotonia is not a specific medical disorder, but a potential manifestation of many different diseases and disorders that affect motor nerve control by the brain or muscle strength. Recognizing hypotonia, even in early infancy, is usually relatively straightforward, but diagnosing the underlying cause can be difficult and often unsuccessful. The long-term effects of hypotonia on a child’s development and later life depend primarily on the severity of the muscle weakness and the nature of the cause. Some disorders have a specific treatment but the principal treatment for most hypotonia of idiopathic or neurologic cause is physical therapy to help the person compensate for the neuromuscular disability.

**********

And that is very close to what we have going on. K has the condition, but we haven’t determined the exact underlying cause. She is in PT for it…and we have seen a neurologist, and are scheduled to see a Orthopedist next week! That’s the full gist of it as we know it!

K is another story. Not only am I constantly paranoid about sickies and such…but her other issues worry me. The way she walks, eats, etc. Yesterday she choked again. I was right there, but she choked. Makes my stomach flop every time.

Today, though…just now. It’s naptime so I say, “Are we ready for night night?” K, in all of her happy glory says “Nigh nigh!!” and starts walked toward her bedroom. She has one of her (all-too frequent) missteps…but this time fails to catch herself. Crash to the hardwood floor, face first. Cue silent screaming…deep breath…LOUD screaming…high pitched shrieking. I check her lips, no blood…blood at the base of her tooth. Crap…has she shoved her teeth back into her gums? How out were they before? I know they were crooked, were they that crooked? Should I call the doctor? Should I just wait it out? SCREAMING continues…No more happy ‘nigh nigh’…SHRIEKING again…tears streaming down her snotty face…pained ‘how dare you let me fall’ expression on her face.

I’m counting down the days until the ortho appointment…COUNTING…

Oh, but on the upside…K is the ONLY baby I’ve ever known that could blow her nose. STarting at about a year old, she’s been blowing her nose every time you hold a tissue to it…nuts, huh? *G*

K is another story. Not only am I constantly paranoid about sickies and such…but her other issues worry me. The way she walks, eats, etc. Yesterday she choked again. I was right there, but she choked. Makes my stomach flop every time.

Today, though…just now. It’s naptime so I say, “Are we ready for night night?” K, in all of her happy glory says “Nigh nigh!!” and starts walked toward her bedroom. She has one of her (all-too frequent) missteps…but this time fails to catch herself. Crash to the hardwood floor, face first. Cue silent screaming…deep breath…LOUD screaming…high pitched shrieking. I check her lips, no blood…blood at the base of her tooth. Crap…has she shoved her teeth back into her gums? How out were they before? I know they were crooked, were they that crooked? Should I call the doctor? Should I just wait it out? SCREAMING continues…No more happy ‘nigh nigh’…SHRIEKING again…tears streaming down her snotty face…pained ‘how dare you let me fall’ expression on her face.

I’m counting down the days until the ortho appointment…COUNTING…

Oh, but on the upside…K is the ONLY baby I’ve ever known that could blow her nose. STarting at about a year old, she’s been blowing her nose every time you hold a tissue to it…nuts, huh? *G*