Monday, September 30, 2013

Oh boy Oberto.

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 needed his vent last week, he's getting suctioned like crazy, he's had a low grade fever for several days.... all those little things that add up to make a big thing. But we're doing our best and hoping that it doesn't turn for the worse. His mood hasn't changed and that's always a good thing. Other than having a few super clingy days, he's been his happy little self. 

Our nursing has been heinously sporadic so that makes it hard to plan anything. One good thing about night shift is that Ben has been able to cover any nights he is home and no nurse is available. Unfortunately, for this fact alone, he is now finished with night shift for a while so I'm on duty.... boo. If night time nursing were the only issue then that would be one thing, but our day time nursing has been worse than night time. 

I guess this serves to make me even more thankful for the nurses who do show up continuously. 

.... I guess....

Anyway... school is in action without me, which essentially means nothing is getting done. I better go keep order.  

Thursday, September 26, 2013


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. 

Wednesday, September 18, 2013

Here it goes.

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 been. Let me assure you that everything that was earned or given or gifted to Rambo's Heart was used entirely for families with children in hospital situations. Several people were blessed by your graciousness. 

Rambo's Heart still exists. It's still there if you want to give, still going on in the background. But I felt that I owed you all an explanation of where things stood. Thank you to all who supported. :) 

Monday, September 16, 2013

Oh, baby, I love your ways.

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 school and to make our lives easier when we are out. But it still seems weird. 

Now, I leave you with Rambo being Rambo. (playing with his suction machine)

Saturday, September 14, 2013

Let your bodies hit the floor.

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 she ran to the bathroom because she hadn't had another bathroom break all afternoon and evening. We really couldn't ask for a better nurse. Christine has been by his side and ours since the beginning and has seen him through A LOT. Just another thing to add to that list, I guess :) 

Theodore was not harmed in anyway. No bumps or bruises at all. He just keeps going, this boy. I guess if his bad heart and lungs aren't going to kill him then a stinking little fall from a highchair surely isn't going to do it either. Thankfully.     

Wednesday, September 11, 2013

The verdict is....

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. 


So now, moving on so that I don't have a panic attack......

We met Theodore's new cardiologist yesterday, and I like him. He said his heart is far from perfect (obviously) but there was nothing alarming. Mild leakage out of both valves, stenosis (narrowing) in both valves, enlarged left ventricle, and enlarged aorta. BUT he feels completely comfortable seeing him only once a year. Woohoo! 

Pretty much good news all around. Makes for a happy (albeit slightly stressed) mom.   

Thursday, September 5, 2013

That's what's up.

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 his left arm and leg. It is very noticeable but there is no sign that it is affecting him in anyway or is the cause of something more significant. 

Our nursing situation is getting a little more crazy. We've actually 'lost' 2 of our 4 nurses for the time being for medical or personal reasons. So securing a day time nurse has been a little more challenging. Which means that everything has been a little more challenging, but the nurses we do have really do their best to help us out. So, thank you!

The good news is that even with braces on his feet and patches on his eye Theodore remains 'happy happy happy'.