Sunday, October 27, 2013

Tomorrow tomorrow tomorrow

Tomorrow is a kind of big day. We go to see the special ed classroom where Theodore will be attending school *IF he attends school* and watch what some of the class time is like. Then it's off to chat with the principal and to ask any and all questions we might have. 

I'm feeling more and more relaxed over this whole school thing. I'm not feeling in desperate need of him going and I'm not worried that he won't. I'm actually feeling pretty darn calm about the whole thing. I would love for him to get out (get AWAY) but I also know that no one knows him and can watch him like me. It will take a lot of trust to get him out, on a bus none the less, and into a classroom for several hours a day. But, oh man, could I use it. 

He's fulfilled all the assessments so far: occupational therapy, physical therapy, speech and language, and the general special education one. And, although, there has been no 'official' ruling he has certainly qualified in each. 
Just a quick note of clarity: 'qualifying' in this situation is showing a 25% or greater delay in these areas. Duh. Yes he does. Check that off the list.

However, he HAS had improvements in the last six months. In his fine motor and cognitive skills he has improved, more or less, about 4-6 months across the board. He is developmentally averaged around 18 months although it can range anywhere from 12-24. Slow and steady for this boy.

He is using his walker a lot and he would use it even more if it weren't such a pain for me. But his cords only allow him to go so far and our rooms are only so big and he doesn't know how to turn around..... excuses, excuses, I know, I know. 

As far as his health, he's looking good! We saw the pulmonologist the other day and after waiting for only an hour an 20 minutes past our appointment time (not to mention the 20 minutes we were there before our appointment) she saw him and said he sounded wonderful. Woot! I'm 100% certain that no one has ever said his lungs sounded wonderful... or even good. So that is great news! He will have a chest xray in the next few weeks and we are going to keep a close eye on his oxygen levels because it is appearing that his need is increasing. Which wouldn't make a ton of sense if the lungs are in great shape so we are going to try and weed out all the variables to find out if there is anything really going on or if it's more circumstancial. Let's hope for the latter. There are no other signs of anything being wrong.

Except for today where his trach acted as more of a hose emptying out tons of water from his lungs. No exaggeration. It was like a constant leaking. Not sure what's going on there but lots of coughing, lots of suctioning, and about 4 clothes changes. I think it's just an easy infection but we'll see, as always.

He is adorable and busy. And I love him. 

I leave you with napkin head.


Tuesday, October 15, 2013

You'll shoot your eye out.

I mean..... is there anything else to say? He is stinking adorable. A much cuter version of Ralphie, if you ask me, but still the similarities are there. 

Tuesday, October 8, 2013


You know those days where you feel like you left your brain in bed?

Where even the planned things surprise you?

Yeah.... it's been one of those days. Actually, if I'm honest it started yesterday. Simple things. Simple stupid things. Like Theodore's incessant coughing throughout the day increasing to the point of constant and you go over in your mind, out loud even, the checklist of things to check and try to help him, and you forget the most basic thing that makes the difference. 

Like setting your alarm for 6PM instead of a.m. and waking up with a sudden start 1 minute before you hear your neighbor pulling in the driveway for your morning run.

Like knowing and forgetting Theodore had an equipment company worker coming today.

Like knowing and forgetting he had a speech therapy appointment directly after that.

Like staring in a mirror for 5 minutes at a necklace with a lower case 'a' on it trying to make the 'a' face everyone correctly.

And then, just now as I type having it fall off because I didn't clasp it correctly. (Now I have to figure it out again... maybe I just won't wear it.)



I am out of energy, out of my mind, and apparently out of luck. 

I need a nap; or a drink; or both. I think maybe I just need this day to be over and to start a new one... right after that nap and gin. 

Thursday, October 3, 2013

Summit of Wannahockaloogie

Ruthie just called Theodore "Shark Bait". I don't know why, but it does seem apporopriate. 

Life lessons of Finding Nemo...