Redefining Perfect

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.

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…

Win a FREE YEAR subscription to Family Fun Magazine!

*****

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.

What do you do when you don’t know what to do anymore?

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.

I have so many posts to make and so little time/space to do it. I feel like if I post everything I’ll overrun all of you with posts. I think there will seriously be 3 posts today on different subjects. If it’s too much, tell me. I’ll try to narrow posts down on upcoming days! (I’ve been trying in the past, but it’s tough some days!!) Anyway…onto the doctor’s appointment…

********

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.

The ortho appointment is in a couple of hours. DH has the day off from work and he’s coming with (yay!). I’m extremely nervous about this one for several reasons.
1. I’m worried he’s going to say she needs braces. I know it’s not “horrible” but it’s not what I wanted for my girls.
2. It’s at the hospital that I’m iffy about…not for the docs…but for the people that run the various tests. We had some disasterous results when taking Molly for tests there…and I’m not to keen on having more tests run there.
3. It’s right at nap time *headdesk* We’re going to have some REAL happy campers.

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*

(Yes, I did almost forget)
***********

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!

That I get scared, worried, and sick to my stomach over my girls. I’ll be honest to say that I’m not so worried over Molly (most days). She’s got her issues, but she’s growing and blossoming…and I think that she will be pretty high functioning. Yes, on screaming fit-throwing days, I’m more nervous…but on the average day I’m fine.

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*

We (finally) have SOME answers with K’s feeding issues! Turns out that what we’ve been told for months is WRONG!! Everyone kept saying her tongue lateralization (chew) was fine…and that something was happening with the swallow. It was how it looked to us all. Well, that was totally wrong. The reason why it looks like things were going down so rough is because…they ARE! K isn’t chewing! She’s sucking on the food, then swallowing. Apparently, her suck looks like a good round chew because she struggles with the suck as well. So, everything she’s been eating, she’s been swallowing whole! So we have to re-focus and re-double our efforts in a totally different way.

1. Don’t feed her a bottle first at actual mealtimes. Have her eat the solids first and finish off with a bottle.
2. Try high calorie yogurts and cottage cheese (with fruit for sweetness), etc.
3. Run our dinner foods through the food processor
4. Back off baby food as much as we can.
5. Work on using “stick” foods (cheeto’s) to try to get her to bite with her back ‘teeth’ (she doesn’t have teeth yet, but using that area).
6. Do NOT let her eat unsupervised (obviously)
7. Be aware that a “safe” bite size for her is the same size as the tip of her pinky…which, with K, is less than a centimeter, more like a millimeter.
8. Make sure that she’s getting at least one pediasure a day (she gave us a TON free…YAY)…but otherwise focus on solid foods so that she learns how to chew/use her oral motor muscles.

So. Those are a light dose of the tips she gave us. I’m SOOO glad we went. We go back in a month for a follow up visit. We’re supposed to have her weight before then (works out that she has her nutritionist visit right before).

It’s nice to have some answers!!!

We’ve been asked to get a referral for yet another specialist for K. This time for an orthopaedist.

Today we had PT for K. During the session, I don’t know why I thought of it, but I grabbed my cell phone. I showed her a video I’d taken about two weeks ago of my girls. In it, you see many of K’s issues presented rather boldly. She places her left foot poorly and falls to the ground. She struggles to get up because her left leg is in the air and she doesn’t have the strength to get the leverage. When she does get up she walks to the camera, and then away…and you see her ‘drunken sailor’ gait and how she doesn’t walk in a straight line. At the very end, you see her chase M right up until she stops short before walking on a blanket (an uneven surface).

I found out how good I’ve become at detecting her issues because without a word from me, the PT commented on everything I saw in the video. She became really concerned. We started talking about the issues that she wasn’t resolving, and how she’s smart enough to learn what hurts/makes her work enough to refuse to do it when she sees the toy again…but she can’t seem to pick up on things like proper distance to an edge of a step, or stepping down without turning her foot in, or judging proper step distance.

She has reccommended a vision check. We don’t think there are any issues there, but we want to rule out poor depth perception as a cause for a few of her issues.

Then she reccommended the orthopaedist. She said that he “may” say that it’s solely a strength issue and tell us to continue with the strengthening exercises. BUT, that he may reccommend braces. We’ve expected, and feared, this. All we can do now is make the appointment and hope for the best…but I can’t tell you how I’ve worried about having to make this call. More so than I was concerned about the neurologist.