Spring Break 2009

I have updated our Casa Aishiteru Blog with our Spring Break project outcomes.  I don't want to take up a lot of space here with all of that.

KP is becoming such a big boy.  He is becoming more independent and wanting to do many things on his own and gets very upset when we try to help him.  I have been racking my brain trying to figure out how to make that easier, but aside from installing a low sink for him, I was at a loss.  Then, we left a stepstool out in the bedroom while we were working on it, and KP came in and climbed right up.  It is a good, sturdy stool so....

KP is also more picky about his snacks.  He knows exactly what he wants.  We have been out of his mommy approved whole wheat organic bunny snacks for a while because our usual grocer stopped carrying them.  But a quick trip to the Vitamin Grocer revealed a new source. Yay.  And although KP has not had them in a few months, he recognized the box.  And one morning managed to knock the box off the counter and bring it in to me so that I would give him some.  Which ended up keeping him occupied for a while as he came and grabbed handfuls at a time.  But, when that got to be too much, he wanted me to lay them out in his fort for him so he could stay still and snack:
Dylan has been playing guitar hero with KP lately, so on this particular morning, I went into the living room to find KP trying to plug his guitar into the PS2.  So, I plugged it in for him, and he was satisfied for quite a while.  Dylan got quite a treat also, when I went to wake him up so that he could play guitar hero with KP. :)

Those are the pictures I have right now.  I will try to do better.  If you are starved for pics, find me on facebook.  I update there MUCH more often than I do here because the interface is just so much easier (and I can do it 100% from my phone).

Now that I have supplied the obligatory pictures, I can go into the details of what is going on with KP.

He's still been sick this last week.  I think that something is going on related to his adenoidectomy, because he really hasn't been quite right since then.  We went to the doctor yesterday and they said he seemed to have a sinus infection and gave us an antibiotic.  This would make sense since we had to stop his last antibiotic prematurely because he kept vomiting.  Hopefully this was the issue and all will be well.  If it doesn't help we will be adding Zyrtec to his regular medications.  That means that he will be on 3 allergy meds.  Can you see why I am not convinced and am looking into alternatives?

On to the big news (things get kind of medical here, so if you want to, you can skip to the bottom where the summary is in bold):

Around the time of KPs surgery, he was not able to take his miralax, and he went an entire day without having a bowel movement, and then through a complete accident, he got a double dose of miralax that evening (I gave him his dose at 4pm, Dylan gave him his dose at 6pm -whoops).  That resulted in a full emptying of his bowels...all over him, the bed and the floor.  But, that got me thinking.

So, we have added a probiotic to his diet 2x daily, and have reduced his miralax to about 1.5 dose once a day.  We are currently adjusting the amount and the time of the miralax so that it will result in a full emptying of his bowels, but it looks good so far.

That prompted me to do some more research.  As many of you know, we have not been hopeful about KPs prognosis for continence later on in life.  We have been thinking that one of our only options would be the Malone (appendicostomy) done around the age of 4 for him.  The malone creates a surgical opening at the top of the veriform appendix to aid in irrigating the bowel. This would keep him "socially clean".  

But now I don't know.  I went over a lot of the research that I had done previously, that didn't apply to us at the time because he was too young to show any of the signs mentioned.  It means a lot to me know.

According to Cincy, here are the factors that must be present in order to be fecally continent:

1. "The child needs to have sensation within the rectum.  Children born with anorectal malformations lack the intrinsic sensation to feel stool or gas passing through their rectum.  Therefore, many times the child may unknowingly soil."

At different stages of his life, KP has always cried prior to passing stool or gas.  Now that he is older, he has told us that he needs his diaper changed, for us to find it clean...for about 30 seconds before he starts unloading on the changing table.  He has also started to stop playing in order to squat and push.

2. "The child needs to have good motility of the colon.  Normally the rectosigmoid remains quiet for periods of 24 to 48 hours, then a massive peristaltic wave allows the complete emptying of it to remain quiet again.

If their rectosigmoid is slow, the stool stays stagnant, hence, constipation occurs and the child may suffer overflow incontinence.

On the other hand, a very active colon may provoke the constant passing of stool which may significantly interfere with bowel continence."

We do not know where we stand here.  We know that he has low motility and is prone to constipation, so we walk a very fine line by strictly controlling his diet and keeping the right combination of foods and meds going through his system to improve his outcome.  There seems to be some indication that proper control of his diet alone may lead us to a better sense of continence, with minimal medication.  Unfortunately, he is not always just with us, and eats whatever people give him now.  We will not be able to truly test this theory until he is old enough to communicate what he can and cannot eat to others.  Which means he has to be old enough to understand from us why he can eat some things and not others.

3. "The child needs to possess good voluntary muscles, or sphincteric mechanism.  These muscles allow for good control and retention of stool."

When KP had his spinal surgery in Jan 2008, the neurosurgeon went ahead and tested basically every nerve in his body that he could get his hands on.  He tested KPs sphincter and reported that it was functioning properly and all of the nerves were appropriate.  That was the very first little glimmer of hope that we got, but we had kind of pushed it aside because we really didn't know what that could mean.  Additionally, except for when we crazily medicate him, KP doesn't pass stool at night.  He holds it until he wakes up.  THAT is huge!

So, armed with this information, I dug a little deeper.  One of the methods of determining future continence is by determining the sacral ratio.  This is done by evaluating xrays and doing some simple math.  Because KP is missing part of his sacrum, we just always assumed that the prognosis would be bad.  Our general surgeon has been reluctant to go into detail with us about it, I think because he did not want us to just give up.  I think his plan has been to revisit this with us in a couple of years.  But, I am impatient, so I looked into it myself...and you'll never believe what I found out.  

I have not yet actually calculated KPs SR because as I was researching, I discovered that the worry truly begins if 2 or more sacral vertebrae are missing.  KP is only missing one.  S5 and his coccyx are gone, and S4 is blunted, but not missing.

Then, I saw what type of defects were most likely to be incontinent.  KP had a high defect, so that also seemed to mean that we would not have a good chance.  But, upon further research, I discovered that in cases of imperforate anus without a fistula, the prognosis for fecal continence was good. Wow.

Summary:

Okay, so what does this all mean?  It means that I am beginning to hope for more than I have any right to hope for.  I think that KP has a chance at continence.  We have begun keeping logs of everything that he eats, and when he eats, and when he poops, and when we give him what meds.

I think we will start potty training soon.  Although they do not recommend potty training IA kids until 3yrs old, I think he is getting ready soon since he watched Scarlett and Alayna go through the process.  If it turns out he is not ready, we will wait, but OMG! It could happen! And I am elated!

xoxo

Margot