Thursday, May 23, 2013

Good news.

I learned something today. Something potentially exciting. The state of Maryland is required to give Theodore what is called a FAPE (free appropriate public education). There are 13 categories, for lack of a better word, that when qualified, put you in a position for this program. He happens to qualify. No surprise, really. 

Okay, but here's the exciting part, people. They are required to meet EVERY need he has. And his disabilities, physical and developmental, cannot DISqualify him. In other words, if his doctor says that he needs a nurse with him at all times then they have to provide that. Including transportation. 

ARE YOU HEARING ME???? This could be the 'break' we have been praying for. Now, of course, there are a lot of details to work out to say the least. And after Ben and I, the number one person to approve this would be Theodore's pediatrician. Who could say that he doesn't think it's a good idea for him to go to school. But here's another cool part - depending on Theodore's needs and development, he could be in a class entirely alone or with just a few kids. AND ON TOP OF THAT, if the doctor didn't want him to go to school for the entire flu season, or say he started to get sick and we needed to keep him home for a week or two, they would have to provide in home services. 

This may not be new news to you, but I am blown away. Every plan for every child is individually made. His plan might not look like anyone elses. He could go to school twice a week or every day. 

I could run an errand.

I could take Israel to an eye doctor appointment.

Theodore will get more intensive care in development.

He'll be socialized.

I could take the kids out to lunch.

The possibilities are endless!!!!!

Now, I see that I am starting to get a little carried away, but I am so hopeful. For the first time, I actually feel really hopeful about what life might hold for this kid. And for the rest of us. 

Don't quote me on anything yet, though. There could always be a hiccup somewhere along the way that totally derails this whole thing. But for right now it's looking good.  

Now, just for your enjoyment, here are some pictures of the always adorable Rambo. And a few from Emma's birthday which just so happened to be Mother's Day this year :)

Tuesday, May 21, 2013

There once was a snail named Herbert...

In other words, be patient.

We have been busy busy busy over here. Trying hard to finish up school, spring cleaning, and trying to plan our 10 year anniversary. 

Theodore has been pretty happy lately. Moving like a beast. Just this morning he was in the middle of the living room. I quickly went into the kitchen to pour more coffee but before I could even get the mug filled I hear the pitter patter slapping of his little hands on the kitchen floor. How he moves that fast I will never know. What we will do when he is walking I seriously do not know. And I question if all this work to get him to walk is a good move.... I think I'm going to have to put him on a leash like a dog hooked to a stake in the yard. Give him a good 10 foot perimeter to cover and just let him run circles all day.

That's neither here nor there yet. 

Right now he's doing this thing where the back half of his body is in crawling position but he lays his head on its side on the floor and scoots around the room until he bumps into something. I have no idea why but I must get a video of this before it stops. It's hilarious. 

He also loves to dump everything out. EVERYTHING. I do not exaggerate. This is supposedly the destruction phase which, of course, comes before the construction phase. I wonder if he will just as heartily enter the latter phase....

We have an upcoming meeting this week about transitioning Theodore's therapy. He is now approaching 'school age' and has the chance (possibly) to go to programs at school or continue his in home care every other week. This is actually a much harder decision than you might think. There are pros and cons on each side that I will not bother you with listing, but my hope is that he can partake in some school programs. Yes, believe it or not, that is my preference. However, for that to take place there are MANY MANY MANY things that need to be set up, arranged, taken care of.... So much so that it seems nearly impossible. The biggest issue being someone with him ALL the time. Including transportation. Which is also something that needs to be specially planned. I'm honestly not sure how much the school system can do but we will find out soon. 

I think that pretty much catches you up. I look forward to more frequent blogging in the weeks to come once school is finished. 


Thursday, May 16, 2013

Freak of nature.

As though Theodore needs to prove that any more thoroughly. This kid, I don't get him. He is a good natured child. A REALLY good natured child. He rarely complains and if he does then something is most definitely wrong.

I really shouldn't complain.

I really have nothing to complain about in that respect.

Oh, did you think I actually wasn't going to complain? You know me so little.

I can't take it!! This kid and his 5 minute naps are enough to drive me crazy. You would think because he has to work harder to breathe, 
etc that he would also sleep just as hard. No. We are lucky to get a 15 minute nap out of this child. 

And that's only if a fly doesn't land on a twig in a mile radius of our house and snap it. Because he will hear it. And he will wake up. And he will cry until you get him. 

This kid.

He doesn't nap. He doesn't let mommy catch a nap. End of story. 

Well, end of chapter anyway. I love the snot out of this boy. (and a lot of the times he takes that to a literal level). He's my booger butt. And that, I suppose, is the end of the story.  

Wednesday, May 1, 2013

Interesting fact.

Or depressing, depending on how you look at it. 

Last year, counting ONLY trips to and from Baltimore for Theodore we travelled over 3700 miles. 

That's a trip across the country. Except we only got as far as "Charm City". Barf. It's like we're in some crappy twilight zone dimension and we can't seem to break free. 

If we were to include all the local trips we made for Theodore we would be WELL over 4000 miles. 

The boy is cute, I'll give him that, but seriously?? It's a good thing he has a dynamite smile. 

This year is working out a bit better. Mostly because I've just been putting off all of his appointments. I can't take it anymore, people. Every time we go we answer the SAME questions and get the SAME information back. It's all starting to seem quite pointless. And to travel an hour and a half for a 15 minute appointment. UGH. Last year, he was a bit more precarious and actually had some issues to work out. This year he is holding steady so to see a doctor is purely for them to look at him, say what we already know "Yup, nothing's changed," and then pack up and head home. His health is absolutely important to me. But my sanity is also cherished.. .and it is fading. Fast. 

He has 11 current specialists. No big deal. But to see all of them at least twice a year. And at least 3 of them every 2-3 months.  And that's not mentioning any time he has to stay for being sick.

I want to die.

He is well over due for a follow up to that bronchoscopy he had last year. I keep putting off his urology appointment. Don't roll your eyes at me. That testicle doesn't matter. He's not having kids, ok. We all know it. It's not a surprise to me. 

If there could be more coordination in the appointments that would be helpful. But this doctor only sees patients on Monday, and this one on Thursday, and this one is booked until August. 

It's a nightmare. I know I sound really negative, but that's because I am. Yes, if you couldn't tell we had one of those appointments the other day. And we didn't even get to see the doctor! We had to leave before rush hour (which we hit in the city anyway) and after being there for over an hour we couldn't wait any longer. We did see a 'counselor' or something or other and she spent a good amount of time with us, but I didn't make the appointment with her. I made it with the doctor. For 2:30. And at 3:40 I still hadn't seen her. 

Just today I found out that one of the doctors Theodore sees comes to Annapolis twice a month. They asked me if that was more convenient. Ugh... YES!!! Why have we not known this for 2 years? WHY AM I THE ONLY ONE WORKED UP OVER THIS? WHY AM I THE ONLY ONE YELLING????

Okay, I do actually understand why you aren't yelling. But can you see my point? The frustration is at a boiling point. He is not our only child. I can't just take him willy nilly everywhere people want him to go whenever they want to see him. I refuse to keep answering the same questions over and over again.

And I still have to figure out a day to get him to the lab so we can see if we can stop these shots or not. Which would be super nice if we could, but it's just another thing to do. 

Alright, my rant is over for now. My point is that you may be seeing a kid for sale (or free) on Craigslist in the near future. I'd steer clear if I were you.