Friday, June 4, 2010

The River of de Nile..

Do you ever have one of those days??

Days where things you've known about for a while suddenly just smack you upside the head and make you notice them?

Today is one of those days for me..  Things just keep piling up.

The Toddler has changed dramatically in the past few months.

The Toddler I used to know was up and running from the moment you set him on his feet in the morning until you wrestled him down for a nap or bedtime. He has always been one of those kids that you hold just right, pat his butt & hum just so to get him to go to sleep.  He didn't eat alot of food or he crammed it all in at once because quite frankly he didn't have time to sit still.  His developmental therapist never really got to work with him because he wouldn't sit still long enough. He'd grab her toys and run across the room giggling like mad.. Let's place chase the baby!

The Toddler I know now sleeps in. When he does wake up, he isn't really awake and wants to sit and cuddle on my lap for 30-60mins.  He lingers over his meals, just sitting there slowly taking it in.  He takes at least two naps a day and comes to me , crawls up on me & lays his head down because he's tired.  While he still doesn't cooperate with his therapist (ha), he does sit down for the entire hour that she's here and somewhat acknowledges her attempts.  I still see glimpses of my rambuctious toddler in there.. He has bursts of the old him where he'll tear thru the house laughing and tossing things over the gate.. More often than not he's on my lap, head down watching tv or quietly just absorbing the surroundings.

Initially I thought it was a growth spurt (I really need to stop assuming this! Remember the last growth spurt with Drool Prince?!) but it's been happening since March and the point of a growth spurt is that it happens for a short period..  The Toddler now sleeps at least 12hrs at nite plus one large 3-4hr nap & 1-2 smaller (45min ish) naps.  His schedule reminds me of that of an infant..  He's awake for 3hrs and ready for a nap.. sleep, awake 3hrs and ready for a nap.  His therapist commented today that this is not a normal 2yr old behavior. 

I knew that.. but I was hiding.  I wanted it to go away on it's own so we didn't have to go thru the tests and wondering and waiting.  I wanted it to be a super long growth spurt because I just didn't want to deal with something else to worry about.. Denial.

We recently had a visit with Dr Lung who feels that since the sleepiness isn't going away, we need to do another sleep study to check out the sleep apnea again.. Fine, ok whatever. She also finds that his lungs are not clear.. Wait, she said "Most definitely NOT clear".  and since he hasn't had any signs of a cold for quite some time, she fears he's aspirating.  Great.  Swallow study = scheduled.   Oh and he's lost 2lbs in 6wks but we are hoping that's just from going off the pediasure and his weight is stabilizing on regular food..

She also asked about his 'overall' diagnosis.. 

Say huh?  

You know, he has asthma, GERD, heart, developmental & speech delays, possible aspiration, sleep apnea... Did his mom drink? Is it possibly fetal alcohol??  

No, not that I know of but thanks for adding that to my plate of worries.

Still I blew it all off.. We've known about the sleep apnea for a long time.. The T&A surgery didn't help a bit with the sleeping at nite..  The only thing that really concerned me was the lungs not being clear.. We've been in there before where I've seen no outwards signs that his lungs should be anything but clear & she's announced that they were not..

While discussing things with his developmental therapist, she gently told me that she has 2 other children she's working with at his same age & they are both doing things that he is not.. She's not so worried about the speech because Hello, he is the baby  of the family.. The youngest of 6..  But she also wonders , like I do, if it's possibly heart related.

So I did what most of us do (whether we admit it or not).. I googled it.. cuz I'm a dr and all, they just forgot to give me the title after my name.  So I put in heart issues, fatigue & gunky lungs.. Guess what I come up with?  Heart failure..  Uhmm no thanks.   I'll take sleep apnea & aspiration instead.

I do have a call into the cardiologist since they did say if we saw a change in behavior to let them know.. I just put it off because I'd much rather it not be a heart issue..

I like living in denial..


  1. It's tough when it all comes crashing in ike that. Hang in there, Mama Chaos

  2. Well I commented last night, but I don't see it. Anyway, call me if you need to vent or cry or anything else!! Huge hugs friend!


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