An open letter to Dude's teachers

To Spencer’s Future Teachers, 

      Congratulations!  You have the pleasure of teaching my amazingly awesome, super adorable, and absolutely amazing child.  I’m sure you’ve heard a lot about him.  His first week of school will be hell, for all involved, due to all the changes.   Don’t let this deter you.    Don’t be afraid of him.  He’s actually freakishly well behaved and a pretty mellow guy once he gets in a routine.   His father and I are also great resources to help you teach our child, so please utilize us as much as you absolutely need to, as in the end we both want the same things…for Spencer to be the best Spencer he can be and for him to love school.  

I’m sure you’ve read his IEP and his lengthy list of diagnoses.  The thing to remember about Say Barber Biesecker Syndrome, or Genitopatellar Syndrome, or any of the other thirty of so diagnoses Spencer has is that they do not define who he is.  Spencer is well behaved, brave, a talented musician (although I’m a little biased), funny, compassionate, and a great big brother whether he wants to admit it or not.   He however is not, hypotonia, hearing impairment, cognitive delay, or arthogryposis.

Sometimes it’s easy to forget that he’s three and a half and not a baby.  Please don’t treat him like one, because the second you do, he will eat you alive.  He knows how to play the game of letting people underestimate him.   Make him do things he doesn’t want to do.  He’ll cry a bit.  He’ll either get over it or have a complete and utter meltdown, but at least he tried it and we can try it again or adapt for the next time.    The only way he will grow is if we challenge him.  

My biggest fear with Spencer starting school is the other children.  There are safety concerns, naturally, but I am more concerned about how he may be treated.   Don’t let Spencer isolate himself.  He’ll try to.  He isn’t a huge fan of other children and will often cry when they approach him.  My biggest hope for school is that he will get over that and make some friends, and If he is sheltered from them he won’t.   Kids don’t judge at this age and will hopefully see a buddy, not a wheelchair or a feeding tube.  

My biggest piece of advice?  Don’t panic.  I have kept this child alive for three and a half years with no formal medical training (I actually have an education degree).  You’ll be fine.  Teach him.

Sincerely,

Spencer’s Mom 

I never imagined my life would revolve around poop and pee

So a series of mixed updates.

So Spencer's bladder still sucks...but doesn't suck any worse.  He was super backed up with poo, which may be limiting his bladder function as well.  We never realized it, but now have him on a pretty strict clean out regime.  My theory is while he poops, his body can't get all of it out at once, so he stays chronically backed up.  We'll see what GI says when we go back in August.  As of now, he's getting a cap full of miralax at night, which seems to be helping a little too much.  I might back it up a bit and add some prunes in the morning.  It's very much a game that we play with his guts. 

Spencer is eating like a champ!  He's been eating enough a couple times a day to cut out the feeds.  We still have to do water boluses when he mouth eats because he still has a hard time with liquids.  Our goal was to get him off one tube feed a day before school started, and we've exceeded that.  The new goal is to get him to eat all his meals orally, and supplement calories where needed.   Hopefully he starts to do liquids orally and can keep his weight up, and eventually get rid of his tube.  It's like there is a light at the end of the tunnel now.  It's amazing what progress he's done in just a month.  I also suspect he will have to be feeding himself.  He loves avocado, which is high in calories and great for him.  I am scared about the potential of no longer having his tube.  His feeding tube, for so long, was our normal.  We still, at minimum, have another year of it, so no fretting yet.  It would be awesome to be able to have it out by the time he started first grade.

Dude also graduated from pulmonology!  His sleep study came back with no clinically significant findings.  As soon as I got word, I took all the oxygen supplies out of his medical cabinet and took it straight to the outside trash can.  I'm so excited to be done with it.  It has always been hanging over our head.  They haven't come to pick up the equipment yet, but I will be quite happy when they do.

Spencer's Michelle P Waiver was also approved.  We are waiting for a couple last bits of paperwork and then we can start using it.  The first thing I'm getting is solid wheelchair wheels.  Spencer got a flat and we've been without for a few days.  Hopefully the replacement inner tube comes tomorrow.

Quinn has a giant head.  Her head size went from 30th percentile to 94th in two months.  Her peds is mildly concerned and wants her to see a neurologist just to make sure everything is ok.  Of course I'm a wreck about it and she can't get in to neuro for another month and week.  It figures that out of all the specialists Spencer sees, neurology is the one department we do not see so I have no strings I can pull.  She's going to see a neurologist down here and if anything needs to be done, I'll transfer her to Cincinnati.  We suspect she is fine.  She's meeting or exceeding all her milestones and doesn't show signs of hydrocephalus.  Giant heads runs in Jimmy's family, and Spencer had a similar head growth spurt around the same age.