Wednesday, June 10, 2015

I cried at FunLand.


"I don't think you understand the concept of FunLand." - Benjamin

I cried. Right there under the Paratrooper ride next to the hose for vomit. Right in the middle of FunLand with screams and laughs and smiles all around me. For the most part I think I went unnoticed. Parents too busy videotaping their children on rides for the first time, boys too busy trying to impress girls, kids too busy running away from their parents. 

I'm sure I wasn't noticed. That is until Emma turns around and in an effort to speak above all the noise loudly says "Mom, you look like you might be crying!" And EVERYBODY and EVERYTHING stops. All the noise and rides are suddenly supernaturally suspended mid air and all eyes are on me. The void of movement is palpable. I'm pretty sure time stopped. Yes, yes, people, I'm crying, get over it. And they do in a matter of about 0.2 seconds because, thankfully, nobody really cares.  

I cried at FunLand. How in the world does someone who is having a great, dare I say excellent, time with their family cry in the middle of a mini amusement park? Unfortunately I can't say it was out of happiness. Or I could and this little story could be over. I might seem like an overly emotional woman if I did that, but let's be honest...... I'm not that far from being an overly emotional woman. (Benjamin nods his head in agreement behind me.)

No, this is all because of one boy and girl. Strangers. Two people I see as we are standing in line with the kids. (This is not a walk down memory lane for Benjamin and myself, don't worry. It's not a story of nostalgia and the "good ol' days".) This young lady between the ages of, I'd say, 16 and 30 (is that safe enough?) is holding an oxygen tank that is connected to a young boy, probably early teens. He is an unusually short red head. I can recognize some of his facial features and movements, and could guess that there were some developmental delays although I can't say with absolute surety their extent. There is an instant familiarity. He was smiling, walking around, happy and thoroughly enjoying himself. I have no idea who the girl was to him but she was so sweet and appeared to be enjoying herself as well. 

Okay, so you are probably thinking that I cried because it was oh so adorably sweet. And it was, but you'd be wrong. Or at least partially wrong. To be honest, I'm not 100% sure why I cried. I'm still trying to figure it out myself. But I think it had to do with the fact that I related in so many ways to them. To these people I had never seen before. It was like looking in from the outside. 

To be more clear, I live my life, like everybody, IN my life. I'm inside the circumstances. Everything that happens, the way we do things is just part of our life. It's natural. It's the way things need to be done. It just is. When we go out I don't always think about the fact that we are operating with a special needs child. I mean, I do... but I don't think about the fact that other people see us and recognize that we are different. 

At FunLand, I was the "other people." But I was the "other people" with the ability to relate. 

Yes, I think it touched me in a way that it can't touch others who haven't had experience with a special needs child, but it was more than that. It was also the fact that he reminded me of Theodore. I know that Theodore is different and that he will be different probably for life. I know that there are so many unknowns with him.  But I don't think about that. This caused me to think about these things. It was like looking at Theodore in the future. He may very well be that short. He may very well always be noticeable in a crowd. He may not develop to the point of a normal functioning adult. 

I don't say any of that to be sad or seem defeated. But I live everyday IN that day and this took me outside of that and helped me to view it instead of live it. 

I have no idea if I've made any sense. I just know that those two people will always be precious to me. I just know that I cried at FunLand. 

Monday, April 13, 2015

Well....... that was fun.

Last night Theodore decannulated himself. Yes, it happened and it scared the **** out of me. There are so many reasons it could have been way worse than it was and I am so thankful that God gave me the urging to look over when He did. I'm happy to say that Theodore is doing just fine and my stomach is back where it belong as opposed to on the floor. 

So here's what happened. I put Theodore in bed last night the same way I do every night... off to his dreams so he can try to take over the world. But he had a late nap so he was not falling asleep. He's happily in his bed, I'm on the other side of the room and I can hear and see him sitting up and standing up and playing, etc. At one point I heard a familiar noise. It's hard to describe unless you are familiar with it. But I looked over to make sure that Theodore wasn't blocking his trach with his finger like he so often does. He was standing up and I could clearly see him and his trach collar still in tact so I knew that he wasn't doing what I had suspected. It was back to my little world for me and I left him to his to play until he got tired enough to sleep. 

I'm not sure how much time went by it could have been 30 seconds, it could have been several minutes (but not more than 15- which is an eternity in this situation) but I look over at him again just to check and I see him standing up, trach collar in tact, but he's holding his trach over the side of the bed. Yes, folks, his trach. He somehow managed to get it off from under his trach collar. I know that may not make a clear picture to some of you unless you are familiar with his equipment but it's kind of like getting an undershirt off without displacing your long sleeve tee. Possible, but not easy. Needless to say I ran over with my mind running in a thousand different directions but I kept myself calm so as not to miss a step or rush through the process and cause panic to either of us. I laid him back gently (he looked ok by the way), asked God to please please let the trach go back in easily, and took it out of his hand and inserted it back in his trachea where it belongs. Then I got the trach collar back on and checked his sats. They were a little low- nothing to fret over. But I turned his o2 up and then hugged that little boy so tightly.

You know how, especially moms, we can tend to think about what could have happened and get ourselves worked up over something after it's already over. Like, for instance, and I'm not saying this actually happened, but like if a big brother were to pick up his little sister from behind while her hands were tucked inside her shirt and then she were to face plant on a hard wood floor because she couldn't put her hands down to protect herself. And everything ends up fine save for a little bruised cheek and nose and a small concussion. But all you could do, if again this ACTUALLY happened.... which it didn't..... but all you could do is think about how her nose could have broken or she could have knocked out her teeth. That's pretty much what happened to me - I just kept thinking about what would have happened if I hadn't looked over, if indeed he had fallen asleep trach out without my knowledge. And it's not the oxygen I'm that concerned about, he's proving himself to do well without that, but the fact that his trachea collapses without the trach in. Thanks be to God that it wasn't the case and all went well. 

I do think I've lost about 2 years of my life though and I definitely lost a good nights sleep last night.

Saturday, March 28, 2015

Sloooooooooooow goings and signs

Last time I wrote I said something to the effect of weaning Theodore off oxygen and hopefully being off completely within a month or so.

HAHAHAHA. Pipe dreams. Here's the deal: he was doing really well, but then he got sick. A week of fever and low sats and high heart rate..... some kind of infection or virus, who knows. Anyway, we are going on 2 weeks now of no time off the oxygen at all. And that's okay. It shows us that he isn't ready to be free of it yet. Not fully anyway. Once he fully recovers we'll start weaning again, but he's showing that recovery takes some time. So we have just settled back into same ol' same ol' and aren't rushing anything. 

Below I am listing a link to a bunch of signs that Theodore has learned and is using or is learning. Several people have asked so here is your reference :)

Mama

Dad

School

More

Please

Music

No

Time

Change

Home

Thank you


That's a good start for now. These are the ones that he knows and uses well. I'll do a list next time of the ones we are teaching him.

And for those of you that haven't seen this (and for those who have and still find it incredible like me):


HELLO. Is this not like staring directly at a 6 year old Theodore???! This is his great grandfather and the person he is named after, Theodore Payne Taylor. It's like the same person. It makes my heart so happy for some reason.  

I'll leave you all with that!!

Tuesday, March 17, 2015

Big news.

Big news on the blog today. (Drum roll please......)

We have started weaning Theodore's oxygen! You can probably recall that many many months ago we took him off his vent. (Remember that terrible summer of 2012 that landed him on the vent in the first place?) His oxygen requirement since then has also come down. Way down. 

We took him to the pulmonary doctor the other day, who apparently did not remember that he no longer uses the vent. She was quite pleased that he was doing so well. She also was the first person, aside from his primary doctor, who actually showed some concern about the bleeding from his trach issue. If you recall, last year he was flown to Hopkins because he had a lot of fresh blood and a clot come out of his trach. This has happened 3 times since then. Each time it's over within 30 minutes and he shows no signs of distress but we have no idea what is causing this. So the pulmonary doctor asked several questions and ordered an xray but I've heard nothing back so the old rule "no news is good news" applies. Although it still leaves it all a mystery. 

In any case, his oxygen weaning has begun. Because we already have him off the vent we have saved ourselves from at least 2 sleep studies (thank God... those are the worst things ever) and he is way ahead of the game. If all goes well, we are possibly looking at him being off the vent within a month. And he is doing quite well, but what I didn't expect is that it's not so much his oxygen sats we are watching but his heart rate. It makes total sense I just didn't think about it. He's had several days where he has been without oxygen for extended periods of time and has had no issues. However, yesterday even on his oxygen he had elevated heart rate and low sats. I'm not sure if this is just par for the course or if he has something else brewing, but we kept him on his oxygen all day and we'll see if today is better. Either way, the process has begun and that is seriously exciting and a little bit weird.

On a side note... I've actually lost him. Without his tubing I have no idea where he is and I've had to go looking for him in our home on several occasions. This could get dangerous. :) 

 

Sunday, February 15, 2015

Out.

A few things for this blustery winter day.

#1: I can't recall a better coffee experience than I had this morning. The smell, the warmth, the taste.... everything was exceptionally nice on this cold morning. I'm savoring every second.

#2: I'm out of almost everything. Milk, flour, coffee, cheese, and butter.... what's a girl to do? And I am certainly not heading to the store in this weather. Ben being on night shift means hauling all of the kids with me and I won't risk that. Maybe tomorrow will be a little nicer.... I think we have a few Ramen packs to get us there. 

#3: Yes, I still like Ramen. Thankfully my whole family does so that's a plus. 

#4: Ramen Girl with Brittany Murphy was a good movie. You should check it out.

#5: (No more Ramen, don't worry.) I visited my Grandmother with the kids yesterday. I haven't seen her since the Christmas before last and I'm pretty certain she's only met Theodore twice prior to our visit yesterday. Not that he stood still long enough for her to see him yesterday but, none the less, we were there. I think the five of us wore her out pretty quickly which I feel bad about, but I'm so glad we got to spend some time with her. I love my Granny and wish I could see her more. Love your family, folks. We aren't promised tomorrow. 

#6: I'm not sure whether it's my view of winter or an actual fact, but winter hasn't seemed too terribly bad this year. I know we've had some bitterly cold days. Trust me, I know. But I think overall it's gone by kind of quietly. I usually hate winter and can't fully enjoy fall because I know it means that winter is coming. Just like House Stark. (DON'T SAY ANYTHING. I'VE ONLY SEEN UP THROUGH SEASON 3.) But this year, I decided to embrace to the best of my ability the winter season. It will hopefully be over before we know it, but until then we'll all be huddled in front of our one space heater trying to stay warm. 

#7: Not being able to communicate with Theodore fully is so frustrating at times. He'll come into the room visibly upset and he'll stomp his feet and clap his hands in frustration and I have no idea what is wrong. He has learned to ask for some things but hasn't learned how to sign feelings. I hate not knowing what is going on. 

#8: I would say that developmentally Theodore is around the 24 month mark. He's asking for diaper changes at times and usually needs one when he asks. He is learning his colors, and manners, and is standing from a squatting position. All his therapists and teachers say that he is doing very well and they have seen him grow this school year. 

#9: We have a pulmonary appointment next month and I suspect we will be weaning him off of his oxygen. He is doing really well with little oxygen and I don't think he'll need it full time for much longer at all. What does this mean as far as the trach? Well, in reality, not much at all. Don't get me wrong it is absolutely the first step. And a huge first step at that. And life without oxygen could be much simpler. But we haven't fully broached the whole trach issue yet. What we know is that he has to be able to swallow (which he can't- although I think he's starting to try) and, obviously, his airways need to stay open. As of right now, they still collapse. BUT no oxygen would be AMAZING. I'm not looking too far ahead and just trying to celebrate all the victories. 

#10: The kids found a mouse in their room last night. They screamed at first but then they named him Ralph and are now leaving bread out for him. Not sure I can let that last too long.