So she is doing well prior to March 12th, and not well now.  But, just getting around to this post and in the middle of authoring the next which will go out March 17.

Savanna has presented a number of challenges lately, but few are as familiar to most parents as the ‘blowout diaper’.  Constipation is part of Savanna’s normal panel of challenges which is attributed to several factors. Compounding the problem, she has Hypotonia and hasn’t been very active for more than a year.  Sometimes, she would not have a bowl movement for up to 6 days during the worst periods.  So when it happened, ‘Ho-moly!!!’ as our newly crowned 3 year old Brandon would say.  (He has learned the phrase is really Holy Moly!  but it was funny while it lasted.)  When the momentous moment arrived, usually everyone involved with the event needed new clothes, baths or showers.  Without actually dealing with it first hand, it is difficult to explain.  My experience is that newborns usually do this a few times before they become regular (at least ours did anyway).  But, when she is more than 12 months old, the amount of excrement is significantly greater.  There is a visual for you.  Just so you don’t miss the moment, she would do it about 3 times in a row within 2 hours.  More than a few times, plans changed – even doctor visits were rescheduled due to the collateral damage done by her explosive poops.

Austin scoots things like the activity table to the counter to reach his goals…

Austin in the doghouse, at our new friend’s House, Zane, who also has IS

Bathtime!

At the playground in the swing…

Tristan 5th birthday, these were his gifts.

at the playground

Look! It’s a bird! It’s a plane! No, it’s just daddy trying to take a cool picture…

Tribute to our doctor, Dr. Von Allmen

After the second ‘event’, it was as if a God had spoken and said: “Okay, Okay I have had my laugh.  You can have a break now, carry on then.”   Happiness returned to Savanna and life was good!  And then, we start the process over.  About three days later, the constipation would return.   We double and then quadruple the miralax trying to help her, but it just takes time.  Usually her threshold was about four days and then she was no longer happy no matter what we did, and I don’t blame her.  We tracked it on paper, changing the miralax dose as needed.  We would double dose, then double it again, it just seemed like nothing helped.  The GI doctor felt a stimulant such as a laxative wasn’t prudent, so we were just stuck dealing with this unpleasant cycle.  Looking back, we should have tried the OTC stimulants for adults at a properly reduced dose for her weight.  It may have helped.  The GI doctors see even fewer patients such as Savanna than the epileptologist.  Hindsight is always 20/20 right….?

Part of being a parent of special needs child like Savanna is that you learn that when the brain is not healthy, many autonomous functions of the human body experience some dysfunction.  She is not special from that perspective.  So we roll with the punches, and continue to search for therapies can help her the most.

After her first lobectomy, everything was much improved.  We stopped tracking when she had movements as it seemed she had movements almost every day.   She still had the occasional ‘blowout diaper’, but it was becoming very infrequent.  I didn’t carry extra clothes and car seat covers everywhere we went.  Then her eating really picked up as the solid foods were introduced.  We noticed she seemed to be having pain when she urinated.  All signs pointed to a UTI on numerous occasions.  The most recent one thought had no indication of any pathogen in her urine after a culture as well as a clean stick-dip check.  A couple of abdomen x-rays, and renal ultrasound, and VCUG test later, pointed to constipation.  Apparently, she wasn’t completely emptying her colon when having a normal bowel movement, leaving stool in the colon which can cause pain during urination.  For all of you ladies out there who have had UTI’s, I feel for you.  Our daughter screamed bloody murder when she urinated and it became a scream with other vocalizations that were very, very specific.  We knew right away when she urinated versus falling over on the living room floor (probably from a seizure).

So we find ourselves increasing the miralax dose to help her complete the bowel movement by softening the stool.  And, I now find myself taking extra clothes where ever we go, leaving earlier than normal, and taking the extra car seat cover too.  Ho-Moly!… as Brandon once said.  We are back to the blowout diapers!  She only needs size 4’s but I think today I am going to buy size 6’s and use them when she is due for a movement.

Meeting new friends…

So here we are, living about 2 miles from a family with a child with IS, and did not know it.  We did not connect until after Savanna’s first surgery.  We decided to get together and they invited us to their house for dinner.  It had been almost 30 hours since Savanna’s last movement.  We had given her 30+ grams of miralax.  I knew when it happened it would be significant in nature.  All day we watched for her movement, and nothing.  Time to go to our new friend’s house, and halfway there, there is the smell.  Not just any smell, it is thick, warm, and cannot be mistaken for a simple event – (like a fart – there I said it!)  We arrive, and the first thing our new friends behold, is Rebecca lifting Savanna out of the car seat and liquid poop oozing out of our of her outfit and dripping off onto their floor.  What a great entrance.  We went to work already knowing it ends messy.  Yet somehow despite the odds, we managed not to get poop all over us.  The night went well otherwise, and we now have some new friends for life.

-ken lininger