Rambo's Rampages...

I never really thought about the fact that Theodore would have all the issues he has AND be a toddler. But let me tell you, he is full swing in toddler mode. Simple things like changing his diaper, suctioning him, changing trach ties have suddenly taken a turn for the impossible.  Hands everywhere, turning over, moving, pushing me away, reaching for everything..... ugh. I have a toddler on my hands. I say this often, but I thought I was busy before. I seriously can't take my eyes off of him. Needless to say, Theodore Relief Brigade (as my aunt and uncle dubbed it) is open again and anyone wiling to help with ANYTHING is welcomed. Seriously. With school back in full force and Theodore in full force... life just got real. Again.  Theodore, on a whole, has been doing quite well and his skills have taken off as I've said recently. His health has been a little on the sketchy side. He's been fighting something off for a week or so... not sure if we're winning or losing....

He just got this walker today and he took off. I thought that maybe he would hate it, but that doesn't appear to be the case. I'm both excited and dreadful at the same time. Can you imagine this boy walking???? It's going to be insane around here.  While he's out conquering the world I'm going to be looking for yet another place to store this space stealer. 

I've been pondering something for awhile now and feel that this is the right time. It is with some regret, some relief, some sadness that for now  I am laying Rambo's Heart to rest. For now.  Some of you may be saying, "Didn't you do that a long time ago considering absolutely nothing has been done with it in forever ?" And... yes... that is true. But thinking about the 'next thing' has never stopped even though no real action has been taken in quite a while. There are many reasons I feel this is the right time for this. Our core group has been taken different ways in life (like Kentucky, for one!!!!) for the time being. Kids growing up, school, work, life . It can't be poured into right now as much as we want, it needs.   Our heart for Rambo's Heart is still there. And, again, I stress that it is only 'for now' because I do believe there will come a time where it will be just the right thing for just the right people. As it already has...

So, this little man has just decided that he is going to take off. In the past two weeks, his list of skills has probably doubled. It's like he finally said, 'Okay, okay, I'll give you what you've been looking for,' knowing the whole time he could always do it he just wouldn't. Now he is: waving hello and goodbye putting things INTO a container instead of just throwing them everywhere understanding his relationship to the ipad (cause and effect). Now that he knows he can make it do stuff himself there will be no stopping him. actually playing pat a cake and working on 'The Wheels on the Bus'. I'm so proud :) On a weird note, I just looked at wheelchairs for him. It feels strange. I never thought I'd be buying a wheelchair for any of my kids. I mean, really, what has this kid done that I thought I would be doing? It's not because we don't think he will walk, because we all do. It's mainly for transport if he goes to schoo...

You know that feeling you get when your nurse tells you that your son fell out of his high chair?  Oh, no? Consider yourselves lucky. It is a sinking feeling.  But all that being said, he is okay. I'm not quite sure how he did it since he was strapped in. I should say that she is an excellent nurse. She really is. She takes great care of Theodore and always has. She had him in the highchair appropriately and she left for a quick bathroom break. When she got back she found him on his side on the floor. Of course, she screamed and cried and was FAR more upset than Theodore was. In fact, she said he was looking at her like 'What is wrong with you?' with a big smile on his face.  I asked her to please keep him up for a little while to be safe just in case of a concussion. She didn't let him sleep for the next 6 hours :) She was so concerned, in fact that she never left his side again. By the time we got home he was so grumpy because all he wanted to do was sleep and...

Drum roll please....... The doc okayed him to go to school. Woot. Okay, but that's just the beginning. There is so much that needs to be done between now and then. And SO much that Ben and I have to feel comfortable with and give a green light to.  For starters he needs to qualify for the program (which he clearly does but he has a ton of assessments to go through before they can technically accept him). Then it's meeting after meeting of making his own personal education plan and getting all the doctors information to make sure they can meet all of his health needs and blah blah blah blah blah. And then after all that, we (Ben and I) still have to decide if this is the best route for him. If anything makes us change our minds then it's over.  So I'm suddenly feeling a lot of stress over whether I'm going to like the teachers or the nurses or anything at all since I'm essentially handing him over for the day.  Yikes.  So now, moving on so that I don...

We are officially into our second week of school and we are all still alive. Woot! Summer has been quiet (thankfully) as far as sicknesses or doctors appointments for Theodore. That I did purposefully. I actually can't remember the last time I drove to Baltimore. I seriously never thought I'd be able to say that.  Tomorrow we see the primary care doc who will give us a 'yay' or 'nay' on Theodore going to school this year. I honestly don't know what I will do if he says no. We'll cross that bridge when/if we get there, I suppose. And in December he has a meeting with the school system to make sure he qualifies and yada yada yada. You should see the literature I have been sent regarding this. I have some serious reading to do.  Next week he has a cardiology appointment including an echo so we'll see if there are any big developments there. The hope is that there aren't, of course, but one never knows.  He has still had random swelling of hi...