Changes

When I was in the training for the new WALK chairs in Charlotte recently, a chair of another WALK and I connected. We were sitting next to each other at dinner one night and talking about how hydro affects the lives of our loved ones and she asked me, "Would you change it?"

We're supposed to say no. We're supposed to say that we love every part of our kid and would change nothing. And you know what? Maybe there are parents out there that wouldn't, but for me, I say hell yes, I would change it in a heartbeat if I could. If I could have this same sweet amazing boy that we've got and take away the difficulties that hydrocephalus has brought and will bring to his life? I'd do it. Immediately.

Without hydrocephalus, he would probably be able to eat by mouth. We'd be off formula by now and working on learning how to use a spoon, fork, and sippy cup rather than focusing on how to swallow without flooding his lungs. He would more than likely be sitting on his own, maybe crawling, and probably be trying to keep up with his little sister who decided in basically one day that walking was the way to go. He wouldn't have already had three surgeries in his short 14 months and the likelihood of future brain surgeries (which is almost certain right now) would be slim to none. His biggest worries would be keeping up with a big brother who plays a little rough and a big sister who loves him so much she's constantly hugging and kissing him.

Would I change Nicholas's story so that it was without hydrocephalus? Without a doubt. The truth is, though, I don't focus on that. Because I can't. There's no cure for hydrocephalus and Nicholas was born with it. So we focus on making sure that hydrocephalus doesn't hold him back. That he will hopefully one day be able to safely eat by mouth. By getting him amazing providers who work with him so hard to get him to sit up on his own and one day crawl and hopefully walk. Who are teaching him how to use his mouth to say words. We watch intently for signs of shunt failure so we can get him help the second he needs it. We figure out the best way to store his medical supplies and teach care givers signs of shunt failure to look for and how to hook him up to an extension to feed. We learn the ins and outs of the medical world, and a whole new vocabulary. Revision, Mic-key tube, nissen fundoplication... We love him deeply and try to show him (and all of our children) just how loved he is. 

New Year, New Updates

I've been terrible about updating this blog, but I'll try to be better - especially with all the exciting things going on!

Nicholas is, and has been, very stable. (Knocking on wood right now!). We've had one hospital trip recently and it had nothing to do with his hydrocephalus and everything to do with a user (ahem mom) failure in trying to remove his g-tube button. I couldn't get the syringe inside the spot to release the liquid out of the balloon. I tried several times and since Mike wasn't home to try, I decided to just take it to the experts. The ER had the button out and fixed very quickly.

We have noticed that Nicholas has been having several breakthroughs recently. He's getting much better about sitting up on his own, if we stand him upright he will plant his feet down and straighten his legs until he's standing with assistance, he has started trying out words (ball! mama! dada!), and we've started to feed him baby food along with his formula through the g-tube so he can get nutrients from real food.

I was in Las Vegas for work about a week ago and Mike called me. He had just left the office after Nicholas's appointment with his helmet specialist. When he initially was evaluated, the asymmetry of his head was at 26 mm. At the meeting last week, Nicholas had gotten his measurements done. His asymmetry measured 9 mm. 9. Less than 1 cm of asymmetry. And, his head had gotten smaller than it ever has been before. The helmet specialist told Mike that if this trend kept up, he thinks Nicholas will be discharged from his helmet in April. This is the child the PA in the neurosurgeon's office wanted to not even give a prescription for helmet therapy for! He thought it would be pointless.

Other things -
I went late in January to my Hydrocephalus Awareness WALK chair training. I came back ready and willing to hit the ground running. I'm so excited! I have two fantastic co-chairs who are just as excited as me, we've already started garnering sponsors, and I'll be announcing our location and date within the next couple of days! If you haven't liked our page, please do so ASAP! You can also check out our WALK website or Nicholas's personal fundraising page. We'll be fundraising for the Hydrocephalus Association in his name for the WALK. People can join his team and fundraise for that team as well, create a new team to fundraise in someone else's name (or just a fun team of your making!), or WALK virtually if they can't attend the local WALK. Lots more information to come about helping out in that direction!

As for the other people in our family, Emily started walking about a week and a half ago. She took a few tentative steps and was at that point when I left for Vegas. By the time I got home, she was fully walking. It happened very fast. I was very worried because Zach was an early walker (he was pretty much walking by 10 months), but again I've been taught by my kids that things happen on their own timeline and when they're ready, it's go time. Zach is still doing fantastic at taekwondo, he has a tournament in April and he's going to compete in sparring for the first time ever. His instructor swears he's ready, and I believe him. Zach absolutely loves his sparring class. I have to admit I was really nervous for him to start sparring, it seems so violent for such a little guy. But, it's points sparring, so the idea for the match is to get points, not knock out your competitor. Of course, it's possible that he'll get kicked or punched the wrong way and get hurt, but frankly he could get hurt playing soccer or baseball as well, so we just learn the safe and right way to do things (learning defense is a HUGE part of class) and try to minimize the risk.

Again, I'll try to be better about updating the blog. I know that I've done such a terrible job lately.