What I Decided

If you follow the happenings of the other blog, you know I finally posted about the photos. After doing some very serious thinking about everything involved (Dude. Trust me when I say I kept myself up at night thinking this through from every angle. I've questioned my intent and worried that I might be sending a message that I do not want to send. It's been brutal), I decided against linking to the photographer's page and did not discuss their diagnosis. Maybe I am just hyper sensitive, but I am just not ready to publicly connect them on their own site to a label, especially before they are able to even fully understand the label themselves.

I hope for their blog to someday be a place for them to go and read about their adventures. I want it to be a place for them to see that the memories and fun we've shared, and even for them to see a glimpse of my perceptions of them as they grow. I really do try to celebrate them as they ARE there.

It isn't a place where I ever want them to feel like I've shared too much or discussed things they may find are too personal or too embarrassing or too whatever other adjective they may use to describe me saying too much. I'll error on the side of being conservative for just that reason. Ultimately, the boys' feelings are the only ones I care about in this entire situation.

So for the time being I will hold the diagnosis information close to home and will not share it on their blog. That decision will likely change sometime in the future, but for now I believe that it is the right one.

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As for the In.spir.ation Thr.ough Art people wanting to showcase the boys on their site as 2012 heroes, I am still on the fence. They wrote an email asking for a more detailed description of all they've overcome in their short lives to add to the pictures. My immediate response was to freak out and decline. But, Is.aac really liked the idea of them being featured. We compromised. If I can tailor a response that satisfies both their need for information while retaining my need for remaining semi private, then we will probably let them feature the boys. They are beautiful pictures after all. If I can't figure out a way to write a response that I like, then we will have no problem declining their invitation. (I also spoke to the photographer about my concerns, because this does affect her as well, and she said she would be okay with whatever my decision was.)

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So there it is. With all of this thinking, I've come to realize that I am too fucking hard on myself. My lingering guilt over the boys' beginnings continues to color what I do. It still makes me question everything when it comes to parenting. I put such incredible pressure on myself to do the BEST. THING. for the boys. Which, come on. I am only human. I am placing demands on myself that I can't possibly meet. No wonder I feel so bad about myself sometimes. Sigh.

Me. I am such a work in progress.

Happy Valentine's Day

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From tonight's conversation:
"If you were my age, and I was your age, then we could be married. Wouldn't that be fun?"

Already wanting to marry mom. I think my heart just melted again...

Friday Night Leftovers - The Why Do I Do This to Myself Version

• I spoke with one of the readers/decision makers for the grant I am trying to win. She said there are nice other schools which letters submitted as well. (She brought it up, I didn't ask or hint to it at all.) She ended with "You did a very nice job with your letter."
• I spent the rest of the week trying to decide if she was sincere or if she was just tyring to placate me. In the end, I figured she didn't have to say a word about actually reading the letter, so maybe she really did think it was well done.
• But I am not totally convinced.
• Now it bothers me that I can't just accept her compliment without trying to analyze away any positive intent. What kind of person does that to herself? Jeez.
• Of course, all of this may be for nothing as my district office is being a total douche canoe about the program for which I applied. Bastards.

• People. I did a very bad thing. This is clearly another time I ask what kind of person does this to herself.
• Will be 40 this year...
• It's not likely to end well without help (and I can't justify that to myself).
• Sigh.

Stop by Danifred's for more Leftovers.

Mostly Wordless Wednesday - Therapy Pics

This first picture is of Sh.awn using his walker during physical therapy. The highlight of his therapy sessions is to go into the stinky bathroom. The more we play up how he shouldn't want to go into the STINKY bathroom, the better it is for him. lol. I don't know why he's chosen a room with a toilet as his motivation, but we'll take whatever works for him. He is such a BOY. :)

He is hysterically laughing here...

The women with Sh.awn in his picture are his interim therapist (his regular on maternity leave) and an intern who is sitting next to him. In this picture, the intern looks a bit like me. Weird.

Here is Ja.son during his OT session today. He's making ice pops. He saw the freezer forms while he was riding around the therapy room on his bike and begged to make them during OT. His therapist was kind enough to oblige. (They made a deal that he could make the pops if he'd let her put some kinesio tape on him. As an aside, I am getting pretty damn skilled at slapping that tape on my boy in under 10 seconds. His therapist not so much. Ahem. My resume continues to grow...) It did take a bit of talking to get him to accept that he couldn't eat the ice pops today, though.

Concentrating on his pops...

The boys continue to work very hard in therapy. We are so proud of them!

The Way Late (or Way Early Depending on Your Perspective) Friday Night Leftovers

• So, yeah. This isn't Friday any longer. I started this on Thursday of last week with the idea that I'd post it on Saturday due to Ja.son's Day celebrations of Friday. Anyway, seeing how Saturday was a fantabulously crappy day, I added to it and am posting it now.
• It is taking me a long time to recover from this latest round of medical fun. I am still feeling it in a bad way. I've been dragging myself around the house and work. I put my head on the pillow at night and sleep evades me. I am too old for this shit.
• Sh.awn has been super perky and all around upbeat since he woke up on Sunday. WTF? Don't get me wrong, I am over the moon that he is okay. I'd be much happier, though, if we didn't have these episodes.

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• I completed a letter of intent for a grant earlier this week.
• After being totally annoyed that I had to do it by myself, I was all proud of my bad ass self for getting it done early. (Totally not the norm for me. I am a famous Last Minute Nelly.)
• Then I found out at 9pm the night before it was due, while double checking that I'd done everything, that somehow I had failed to print out the second page of the stupid guidelines. Needless to say, page 2 was pretty important in the scheme of things. Sigh.
• I didn't get to bed until one am that night and still had to work on it every minute I could the next day. 
• That's what I get for being all smug, right?
• Got that sucker in one hour and nine minutes before it was due.
• Success!
• Keep your fingers crossed for me, will you? I find out if I made it to round 2 on the 17th.

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• Started "training" for the March for Babies walk.
• I use the term "training" loosely here.
• I walked around the mall twice and then ate a big lunch at Re.d Rob.in.
• Bought some Sees candy for myself as a reward for "training" so hard. Ahem.
• We plan on making these training runs a weekend tradition!
• See my fundraising badge over there to the right? I'd love it if you could help me reach my goal of $1000.00.

Stop by Danifred's for more Leftovers.

Holy Hell Has This Been a Weekend

If you know me on FB, you already know that we spent Saturday afternoon and night in the ER with Sh.awn. I think I may have lost at least ten years from my life from the experience.

He woke up from his nap retching and throwing up. He was disoriented and was weak. Remembering the last time he snapped out of this kind of behavior, I threw him in the tub and resigned myself to waiting it out for a while. Except this time it was different. He couldn't catch his breath. His heart was beating VERY fast (at the ER, his heart rate was at 160). His eyes were doing their thing. His clonus was on overdrive. He tried to use his weaker right arm, but couldn't get it to clasp around the toy he wanted to hold and was having trouble opening his fist.

We freaked the fuck out. Here he was with breathing that was not normal for him, AND he couldn't use his arm at all. He even had trouble sitting up without a lot of support.

We called my mom to come watch the J's. I started packing a change for both of us and some stuff to keep Sh.awn occupied while we were at the hospital.

We debated where to take him--local hospital which wouldn't be able to do much more than scan him, or Children's hospital where our doctor was. Based on the way he was breathing, we went to the former. They did a CT scan there, but really that was all they did for us. We waited for far too long for them to read the scans only to be told that we'd have to go to Children's anyway. Sigh.

We knew that. We went to the local hospital for them to see what was up with his breathing. The tested his saturation level (98) and heart rate. That was about it. They didn't do anything for his breathing at all. He wasn't hooked to any monitors. There was no oxygen because his sats were good. After about 2 hours, he finally started to breath normally on his own.

The local hospital released us after 6 hours and let us drive to Children's. By that time, Sh.awn had started to act like his normal, extremely pissed at the medical world, self.

At Children's, it was more of the same. They compared his scan to the one he had the last time this happened. They said there were only minimal changes. They offered to do a tap, but we declined. I didn't want to introduce anything unnecessary to his shunt and increase his infection risks. It was clear that his shunt was working at that point, especially in light of his stable scans and normal behavior.

So, what is going on? I can't keep doing this.

Theory one is that he has some sort of occlusion (or scarring which scares me) that is sticking around to fuck things up every now and then. It moves in, causes a blockage and symptoms, and then moves back out of the way. This is plausible, especially in light of the fact that he seems to recover from the initial symptoms after he changes positions and is kept upright. (Had we allowed the tap, there was a possibility that we would have either withdrawn the occlusion or perhaps caused another brief blockage, giving us our answer to what was happening. Then again, the likelihood of that was slim.)

Theory two is that his pressure tolerance is changing. Even slight changes in the pressure in his head is enough to cause symptoms now. The problem with this theory is that the symptoms are not happening after a long night's sleep when you would expect the pressure to be at its greatest, but rather after a short nap when it is not as great.

Theory three is that both one and two are in play. An occlusion is causing a super slight increase of pressure, which doesn't show on the scans, but his body is reacting to it in a major way.

Theory four is...

wait for it...

this has something to do with him covering his face with his blanket while he takes his naps. He has always done this to block out light, etc. He doesn't do it at night because the room is dark and there is no need to. The idea is maybe he is inhaling too much carbon dioxide while he covers his head, and his body is reacting to the lack of oxygen. His hydro could also be making him very sensitive to even a tiny bit of carbon dioxide. They'd have to do a blood gas to check for that (hello NICU term), but they thought it wouldn't matter by the time we had finally reached Children's as his symptoms were completely gone anyway.

So.

They discharged him from Children's at around 2 am last night. We got home at around 3:30. He slept on me for the rest of the night, woke up at 7:45 am and hasn't acted funny since. He doesn't even act like he is freaking tired! (Unlike me, who is hardly able to think a coherent thought.)

We will meet with the neurosurgeon in a few weeks to follow up. I'd guess he isn't going to give us much more than we already got, so it feels pointless to even make the trek down there again.

The good news is that his shunt seems to be fine. He now seems to be fine. Ultimately, that's all that matters.

Ja.son's Day, 2012

Today was another special day for our family. ‎4 years ago, after 100 long days in the NICU, our Ja.son finally came home from the hospital.

Today is Ja.son's Homecoming Day!

He has been looking forward to this day since Sh.awn's day, so you can imagine how excited he was. He and daddy even made a sign to commemorate the day!

Happy Homecoming Day, Ja.son!

Ja.son got his turn to be celebrated, and I'm pretty sure he loved every minute of it.

Can I open my presents yet, mommy?

He got to choose whatever he wanted for dinner--waffles and hot dogs. Mmmm...

He got to blow out candles on his very own red velvet cake.

Blowing out his 4 candles.

Tasting the cake before the candles are lit.
Coincidentally, he got to 4 finger licks before we stopped him. :-)



Then Ja.son finally got the chance to open those presents...

Hey! What is this?
A car!

Carefully unwrapping his second gift...

A new game for his LeapPad!

Then it was time for cake!

Forget the fork, just shovel it in. It's faster!

He likes it so much, he's trying to steal daddy's, too!

Sh.awn's chowing down himself. :-)

Red cake? Surely you jest. Cake is supposed to be chocolate!

We had another fantastic celebration!

Ja.son's Day, 2012

Happy Homecoming Day, Ja.son. We love you very, very much!