The House of Doo

The House of Doo

Tuesday, September 24, 2013

These days...

It has been a couple of weeks since I last updated.  Not a whole lot has changed in our lives, however.  I suppose that's a good thing.  Colt is talking up a storm.  Every day it seems like he repeats something we say that we've never heard him try before.  Granted, nothing he says is very clear, but I am thrilled that he is trying.  I can USUALLY figure it out.  He is even putting some words together!  It's almost like he knew how to do it in his head, he just couldn't get it out through his mouth.  Now that he's starting to get it out, he is chaining the words together easily.  I love it!  He still calls himself "Gut."  Last night, he pointed to Ryan and said "Gut's Daddy."  Then he pointed to me and said "Gut's Mommy" and smiled.  He's so proud of himself. :)  He still gets some consonants mixed up, like he says "daggy" instead of "daddy" but he's pretty darn close on most things.  :)  He's really torn up about the Arby's in Fort O closing.  That was his favorite place to eat!  He has been saying "Ahh-by's guzzed!"  (Arby's closed!)  He says it at least 17 times a day.  That's okay, we're thrilled.

He had his preschool evaluation a week and a half ago.  I have no doubt that he will qualify and will be starting right at his third birthday.  I am excited and terrified at the same time.  We have a couple of decisions to make as to where he goes, so I pray that we choose the right place.

This Friday, we go back to Colt's ophthalmologist, Dr. Peterson.  I always enjoy seeing him, especially if they don't dilate Colt's eyes.  That is always a battle.  We have been noticing Colt doing something kind of strange with his eyes and I am anxious to talk this over with the doctor.  When Colt was younger and his Nystagmus was not as controlled as it is now, he used what is called a "null point."  The null point is a head/eye position in which the Nystagmus slows or stops. Since Nystagmus causes blurred vision, it is good to have a null point, because the vision is better in that head position.  Before his surgeries, Colt's null point was to the left. You can see he is using it in these pictures:
 It is most noticeable in these two pictures, where I am straight ahead, yet he turns his head to look at me.

Anyway, all of a sudden, it's like he's using his null point again, but if he is, it has moved.  We keep catching him with his head down like he's looking at the ground, then turning his eyes up, as if looking over glasses.  He mostly does it when trying to see something close up, or more clearly.  It may be nothing, but even the ladies at his preschool testing mentioned it.  So, we shall see.

Still no word from the geneticist.  We are about to accept that Colt is just different and doesn't really fit into any one category.  He is unbelievably smart, we do know that.  I imagine all parents feel that way, but he has a memory that surprises people daily.  It's bizarre, really!  If you do something one time, Colt will NEVER, EVER forget it.  I need to remember that.  I will never get away with anything with this one, I can already tell.  ;)

So, that's where we are these days.

 Precious monster.  :)

Tuesday, September 10, 2013

I Do It For Colt.

Let me just vent for a few minutes, okay?

I’ll start off telling you about my work schedule.  I work on Tuesdays and Thursdays all day.  On Fridays, I work until about 1:00 without taking a lunch, so I can eat lunch alone and run the errands I need to run without a 43 lb. two year old tagging along making it difficult.  I do this for maybe an hour, two at the most before I go pick him up from his Mimi’s house.  

Now.  My days off.  Mondays, we have Speech Therapy.  This Monday (and all too often, it seems!) we also went to the pediatrician’s office.   Colt has a double ear infection (sixth double ear infection this year), a sinus infection (fourth this year), the beginnings of bronchitis (fourth this year, twice requiring two rounds of antibiotics), and also something viral causing ulcers in his throat and a 103.6 degree fever since Saturday.  On Wednesdays, we have Physical Therapy and usually something fun for Colt as a reward.  Last week it was the Tennessee Aquarium.  The week before, it was Waffle House (don’t judge me) and the playground.  Fridays, as I mentioned, I get maybe two hours to myself.  THIS FRIDAY, I take Colt to the Walker County BOE place to have him tested for Special Ed Preschool.  Saturday, my husband works all day and usually into the evening hours, so I have Colt to myself AGAIN. This is fine, don’t get me wrong, but it is HARD.  He requires A LOT of attention and help.  Sunday, we go to Sunday School then church, go to lunch, home for Colt’s nap, then back to church.  Next week, I go to the doctor, the week after, Colt goes back to his eye doctor to check and make sure the three surgeries he had last year are still doing their job.  Sometime in there, we are supposed to hear from Colt’s geneticist to hear the results of his second round of genetic testing.  Also in there, we go back to the ENT, even though we just went in June, to see if they are going to do tubes again, since Colt has had 3 double ear infections and a busted ear drum since our last visit in June.  


People are really, REALLY clueless.  I do not feel guilty in the least for those two (at the most!) hours I get to myself, even if it is to walk aimlessly through Target with a Starbucks latte.  I would give anything for a massage or manicure/pedicure or to be able to go shopping and not feel guilty because at home on the kitchen counter are over $4,000 worth of medical bills that need to be paid. 

Please don’t take this as a complaint, or a cry for attention, or an attempt to make people feel sorry for me.  It is not that because to be honest, I would not change it for a second.  Take it as a reality check for those of you who think that I hardly do anything with my life because I only work 2 ½ days a week.  

 I do it for this boy.  I do it for Colt.