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.

I spent the better part of the weekend (from Thursday to Sunday) sleeping.  I was sick, sick, sick…and have just now started feeling better.  The worst part of being sick was having two sickies with me (*thing 1 and thing 2*) that were just as miserable as I was. 

Riley recovered fast, but it clung to my Angel like  glue. The cough lingered and she was put on antibiotics (drugs…woohoo).  She recovered a bit, but continued to cough.  And cough. And cough – waking up at nights.  It wasn’t continuous – just lingering. So, as luck would have it we had our regularly scheduled visit to the CF clinic yesterday. Her lung functions have gone down, so the pulm has extended and increased her antibiotics….and added steroids. 

So after all of this, I’m finally back.  Still keeping an eye on my baby – but I’m here!  Sorry I was so MIA.  Whateer this summer cold was made of, it kicked my ass!

And the Rock and Roll?

Well, it’s RIGHT HERE!!

We are a full sick house today.  It started last week with me having an upper respiratory infection.  Just as I got better, Riley got the sniffles.  Then yesterday I got them again.  Runny nose, head congestion, a full blown head cold.

Today the part I always always fear happened.

Angel was congested when waking up.  And unlike Riley and I – she was coughing. 

We have been blessed (and damn lucky) that Angel has not yet suffered any serious illnesses since her CF diagnosis 2 years ago.  That doesn’t stop the fear that grips you with every illness. 

How fast this cold hit, the fact that she has a fever and is coughing worries me more than my own illness or Riley’s.  She was fine when she went to bed last night, and this morning is not the same.  Lethargy, grumpiness and a need to be on my lap all the time…it’s all causing me to worry before I should worry.

Once I knew there was a fever I did what I was supposed to.  I’ve called the pulmonologist and spoken to a nurse.  I’ve put her in her chest compression vest and done a run on the nebulizer.  I’m waiting for word back from the doctor now.

I’m terrified of the Big One.  The first time we end up so sick and in the hospital, her little lungs fighting harder than any of us to get rid of something.  Every sniffle brings it back up, every cough tugs at my heart. 

So in the mean time I’m in the steam room (the bathroom) trying to declog my own sinuses and the girls…because I’d like to be able to care for my baby without my own pain getting in the way.

You know those sneaky roller coaster rides where you climb and climb every so slowly to the top and just as you crest, ready for the exhileration of the drop – it’s just a little bump?  You have to wait another interminable second before the rush of the real drop? I’m stuck on a series of little bumps…waiting for the rush of the drop…

Every step forward with potty training is met with steps backward. 

I’ve tried defending their actions, explaining them away…but I’m down to the last hair on my head, pulling each one out in frustration.

I can’t call them ‘accidents’ I know that they know what they’re doing…but do they?  Despite the fact that they know where the potty is, how to go, they are no longer afraid of it…and have even used public toilets…they have yet to initiate a potty run. 

I take that back – Angel did it ONCE, on father’s day. 

I’m tired of washing sheets every day because they keep wetting the bed.  I’m tired of asking them if they have to go and gettig a flat out ‘no’ – only to have them peeing on the ground two minutes later. 

Is it a sensory issue?  Or just stubborness?  Or are they just not ready, despite being 3&4?!? 

I don’t want to return to diapers…I don’t want that cost…but I don’t know how much more I can handle.

***

My apologies for the potty-roller coaster analogy…and for a post about potty-training…I’m just super frustrated right now.

Tuesday I got the call.  The last specialist on the list.  Specialist #8 for Angel (that’s not including her therapists…this is just doctor specialists we’re talking about).  Specialist #2 (I believe) for Riley.   We asked the pediatrician to make a referral to the Developmental Pediatrician.  The orthopaedist suggested it for Angel way back in January given her case history. After researching exactly what a DevPed does, we also asked for Riley as well – because of her autism and reaction to school last time (advice really).

As horrible as it sounds, it was very validating to hear what the nurse had to say about the doctor’s response to the girls’ cases. 

1. After reviewing the case files the doctor feels that their cases are complex and wants to see each of the girls on a one-on-one basis – meaning no double appointment with their sister.  She wants to get to know them each individually for at least the first appointment.

2. She wants them in ASAP.  We’ve been scheduled for the first appointments available (November) but placed on the wait list so that we get the first available appointment.  This is by the doctor’s request, not ours!

So it’s all said and done with…except the appointments themselves.  Archie will go with Riley.  I will go with Angel. 

Hints of hope are creeping in again, but I’m trying to keep them squelched.  One step at a time and right now I have a long way to go until November…

Six months ago I spoke of a chance
A chance that I was afraid to take.
Afraid of another disappointment,
Afraid to come up empty again.

It took me six months, but I took the leap at one more chance for answers. When we met with the pediatrician last week I asked her to make the appointment.  One last specialist, one last chance.

If this one doesn’t have the answers, I’ll have nothing left to grasp for.  The only other option is one we must discuss thoroughly because following that path could destroy the strong foundation we have created for her care.

In a few months we’ll go and see and hold our breath and pray for answers. Pray that this doctor has the key to our Angel’s past and future.

Nowhere.

Up until now bribery has had no effect in our massive attempst to potty train.  They are not interested.  Well, they ARE interested in the prize. Riley asks me at least once a week about the tinkerbell hats.

But they aren’t interested in what it takes to GET those hats.

Today I threw in the towel.

I know they’re old enough.

I know that THEY know EXACTLY what they’re doing – they are just being stubborn.

I refuse to put diapers on them.  I’m done.

I’m going to be doing a LOT more laundry during this battle of wills.

I’m hoping that treating them like big girls will make them act as such.

Either that or I’ll end up in the funny farm.

Excuse me while I go have an aneurysm.

I’ve been missing the Weekly Winners posts.  I love my laptop, but I can’t edit pictures on it and rarely get on the desktop so…well, I’m lazy.  But, I’ve got some pictures for you from the girls birthday and then from last weekend when we all hung out outside enjoying the gorgeous weather!  I’m missing it desperately today with the drizzly yuck…

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With SID you have two camps – the sensory AVOIDERS…and the sensory SEEKERS.

I have two SID girls – one Avoider (Riley) and one Seeker (Angel).

Up until a year ago I was certain that having the Avoider was the “Worst” of the two.  Social situations, eating, playtime were all such challenges.  Planes flying overhead were a nightmare for weeks, trucks driving by. 

Coping mechanisms were learned and slowly with time it became less of an issue.

Then we had our Seeker.  I thought it was tough to handle when part of her seeking techniques were ramming her head into everything.  Screaming at the top of her lungs. Throwing everything. Breaking everything.

But as much as we’ve been able to curb (some) of these events – in the past year we’ve had the occasion to experience the worst of the SID habits.

Smearing poop.

Poop on the walls, the beds, the clothes…IN HER MOUTH.  It makes me wonder for her intelligence (sometimes when I’m most stressed) - and my sanity.  It is one thing that I can seriously get truly and horrifically upset and disgusted for….

And it’s one thing that I haven’t the foggiest idea how to stop. The taste obviously doesn’t put her off.  The smell.  The feel.  None of it. 

I’ve found out through research and searching that this isn’t uncommon – but is ALWAYS stressful for the parents.  I also see posts of some children doing it even after potty training, and beyond. 

So for now I sit and research coping mechanisms again…although this time, I search for coping mechanisms for myself and my husband. I don’t think either of us look good bald.

My mini-me…my screamer…my cause for many panic attacks…

Today you turn three!  Three years old…How can that be?  You were born so tiny, so early, and after a surprise (!!!) pregnancy that I was only aware of for 3 months before you joined us.

Your giant brown eyes so filled with joy and love…I can’t get enough of them. 

You challenge us on a daily basis.  You make us smile in the next turn of your head. 

Despite the struggles and challenges you’ve brought us – with everything from just normal motion of your muscles to talking to breathing – you’ve blossomed into a bright little girl.

The cock of your head when you answer a question, or the way that you reply just by saying “okay” to everything.  Frustrating – and adorable…and I wouldn’t take back one day of the past three years.

Happy Birthday, my Angel!