Monday, February 24, 2014


School has continued and Theodore is LOVING it. He has yet to have a full week of school since he started. His most being 3 days in a week that he has gone. But that is only because of snow and ice and fog and yada yada yada. 

Every morning we get out his wheelchair and he claps. Then he rides up the lift on the bus and he claps and waves to the driver and aid. Then he gets to school, and I hear tell, that he claps and smiles at everyone he passes. I'm still waiting for school to wear him out the way I thought it would. He doesn't take a nap the entire time he's there and except for the occasional nap on the ride home he's awake for several more hours. His nurse is probably more ready for a nap than he is. But I'm not complaining. He is having a grand time and it gives us some quiet at the house. 

Theodore is starting to turn into such a big boy. He's not necessarily doing anything new, but there's a maturity in his actions, you can see him putting things together in his head. 

And he's still just so darn cute.

Monday, February 10, 2014

Take two (and pictures).

We all know that the first day of school for Theodore was less than pleasant for all involved. Here are finally a few pictures quickly snapped from the chaos of that day:

Can you tell the kids woke up early to say goodbye?
Everyone looks so tired. 

They each said a prayer for him before he left.
(That's his wonderful nurse we are SO thankful to have back.)

 And then he hit the bus.
In the rain.
He was not happy about it.

But he made it to school safely.
Although you can tell he wasn't feeling well.

Thankfully today was a much different day.
He got on the bus without too much fuss.
And no crying!

And here he is in his classroom!

His nurse said as soon as she got him out of his wheelchair he immediately crawled over to the table where all his classmates were sitting and pulled himself up to see what they were doing. Not bad for only the second day!

He makes me so proud!

Wednesday, February 5, 2014

And he hasn't been back since.

And that's true, although, not for reasons you might think. Theodore did not go back to school yesterday or today but only because he is.......... sick.

And, you know, I can't even blame that on being at school. He started showing some small signs of something stirring the night before his first day. But really really small signs that you pick up on and log away but don't need to act on. The type of signs where it could go either way. Well, it chose which way it was going to go. It chose poorly. 

He got back from school and was TUCKERED OUT. Actually, in a 3 hour period he had taken 4 naps! And that was at school. Unheard of! And once he got home he barely moved. THAT is saying something for this boy on the run. He literally laid on the floor and scooted around until he fell asleep right in the middle of the room. Twice. School might be just the thing he needs to get out his loads of energy. And you'll be happy to know that he didn't spend the whole day crying. (I know because I peeked in the window of his classroom from outside and then visited his classroom for 15 minutes to check on him. Yes I did.)

All in all, I'd say things could have been worse. He was definitely confused and anxious, and not feeling well didn't help matters. But it did my heart good to see that he was okay. And SO MUCH THANKS to the two ladies (one therapist and one coordinator) that he knows very well who spent practically the entire school day with him. You two are amazing! And I know he was so thankful to see familiar faces. 

Today he is still out of it. Actually, I think he has the flu. That or a really bad cold. His oxygen requirement is up significantly, he is completely lethargic and he has been in need of his vent (which he hasn't used since June). So things aren't looking great at the moment. He's okay. He doesn't need the hospital.... yet and hopefully not at all, but poor guy is miserable.

At least we made it through the first day of school (a few pictures in the next post). I think I handled it worse than he did.... and hopefully we will all fall into an easier routine since it was pretty hectic that first morning. We'll keep pushing through and see what happens. In the meantime, I'm going to try to keep this boy out of the hospital.    

Saturday, February 1, 2014

It's happening.

It's really happening. Monday is the day. 


I'm not going to lie, I'm having a heart attack. Seriously, I've been having a constant mini heart attack since his physical therapist brought his wheelchair. 
(Technically, it's not his wheelchair it's one we are borrowing until his comes in. And it's pink.)

But, finally, everything is in place and Monday is the big day. The school keeps laughing and joking about how they'll understand if they see me lurking in the bushes or peeking in windows. They aren't understanding that I am actually going to be doing those things. I've said it over and over again. They think I'm kidding. They'll learn. 

A lot of things have been going on the past few weeks in preparation for school and just life in general in regards to Theodore. The first of which is that we switched equipment companies. I am thankful for all that his former company did for him and a few of the people there we will miss. But this new company has put on a great first impression. We not only have newer, nicer equipment but we are getting supplies that the other company could not give us. Simple, little things that make our life a lot easier. And big things too- like an oxygen home fill system that makes it possible for us to fill up oxygen tanks at home without needing to order new ones. They also took an extra set of supplies to the school for Theodore with no hassle at all whereas the other company was unable to do anything for us. And, one of my favorites, is a new humidifier that is quieter! Woot! Not silent, but much quieter and I am thankful. 

Also, PRAISE THE LORD, our nurse Christine is back. Hallelujer. We could not be happier. I tell her every year that she can't go on her 2 month trip because we always end up in a mess and every year she goes. I think this year is going to call for a lost passport.... but now she is back so I don't have to worry about a nurse literally refusing to enter the house because of the dog or a nurse disconnecting him from all of his equipment to put him IN THE BATHTUB. You laugh, but it happened. She seriously turned off his equipment and took his oxygen off so she could carry him to the bathroom and place him in the tub and bathe him. SO many things wrong with that. 

We have also met his new ENT doctor who I like much more than his former. He and his nurse seemed very surprised that we were not hearing Theodore at all when he cries or laughs. Apparently you should be able to hear some noise around the trach. This is leading them to believe that he has granulomas above his trach and it is blocking any air from getting through. This is not a surprise considering he has had this before and had it surgically removed. So the question now is, is it worth having him go under again to get it removed knowing that it's going to grow back just so we have a chance at hearing him for a short period of time when it's not necessary?? We have time to think about it, but it's one of those situations that just seems stinky. I'd love to hear my son, but is it worth the risk of surgery? Not sure. 

Theodore does, however, seem to be doing quite well. This winter has thankfully not fared too hard for him. He's made it through with no infections or respiratory issues. That is, until he starts school on Monday and is surrounded by all sorts of dirty little petrie dishes. Oh well. What can you do? 

For now, we are happy with the new equipment and thankful for almost to the day one year being hospital free.