Um, hi. Yeah, I know I’ve been AWOL for a while. I’m not even going to try to relate everything that’s gone on in our lives since my last post. Well, okay, for the benefit of the fourteen faithful readers who keep checking back for posts, I’ll try.
- Nik’s been making amazing progress with his “talker” (speech device).
- Nik’s made tremendous gains in eating “real” food. Turkey sandwiches, chicken, spinach (!!) and the like.
- We’ve hit upon something we think might be at the root of Nik’s gawdawful gastric troubles. But it’s complicated and difficult to explain. It’s still a work-in-progress so I’m not ready to write about it yet, sorry. If we’re right, it just might help us all sleep again!
- Nik’s been battling rampant ear infections…again. On and off since Memorial Day. We see the ENT (again!) tomorrow to discuss removal of yet another tube and whether or not to replace them…again.
- Nik’s getting over his sensory issue with sand in a major way. As in we-may-be-hitting-the-beach-this-summer kind of major way. (Insert quiet, hopeful SQUEEEEEEE!)
- Nik’s learning to play in my sister’s pool without his swim vest. As long as he has his arm floats, he does just fine. He can now doggie paddle the length of the pool a couple of times over. The boy adores the water, for sure! Nearly every day the first words out of his talker are “Go swimming. Cool.” Yes, we’ve figured it out; he really does say cool when he means pool. Sometimes he’ll even voice the “puh” before touching the button for cool. It’s adorable. And annoying. But mostly adorable.
- Sadly, the relationship between Nik’s ear infections and lots of swimming? Pretty much a one-to-one correlation. Which, no surprise, also correlates directly to broken sleep. GAH! With this latest heat wave, we’re willing to forego some sleep in order to satisfy the boy’s pool cravings.
- And, last but most definitely not least, Nik has returned to school. Today was his first (part) day. This topic merits a separate post for so many reasons. For now, though, suffice to say it’s not a perfect situation but it’s so much better than we could have anticipated. Where we once felt sick and hopeless about the idea of putting Nik back in school, there’s now a glimmer of hope. It may be elusive— like that pot of gold at the end of the rainbow— but we’re going to chase after it with all we’ve got.
We’re ready, Nik’s ready. I hope school’s ready for him!
Well no wonder you haven’t posted in a while…someone’s been busy keeping up with Super-Nik! Love all of it (except the ear infections, of course)!
That kid never ceases to amaze me.
Welcome back — and, oh my goodness, all that NEWS!
So much you’ve been working on, so much that Nik is achieving!
Can’t wait to hear more…
P.S. We’re working with Joy toward a PRC device too — the Springboard Lite looks like the best match so far.
@JoyMama Ooh! Fingers crossed for the PRC device. The VL has *changed* our lives. Seriously. So much so that I think I’m going to have to write a separate post about it! Something to consider btwn the SB or the VL would be the ability for it to grow with Joy. You can set it up so it’s using the same one-hit interface but can then expand as she develops more vocabulary. We did a short trial w/the SB and then our PRC rep (who is AWESOME!) wondered if Nik would outgrow it sooner than insurance would want to consider replacing it. Just food for thought. Feel free to email me if you have any questions I might be able to answer from a parent perspective.
Wow what a great post! Go Nik!
Were you missing? I didn’t notice. lol Totally understand that you might have had a few other things going on. Glad to hear the positives amongst the chaos. Spinach? For real? Love it! Love Nik!
Yay! It’s so nice to see a post from you again
dislike the ear infections, but thrilled to read the other news!
I have been wondering about you guys! Sounds like there’s been some great stuff happening! Yea for the talker and new foods!
I am most interested to hear about the school stuff-email me when you’ve got a chance.
Oh, and the beach—the Roc LOVES to play in the sand, not the ocean. Maybe we should meet up at Cape Henlopen or Seashore sp?
Kim, I think that sounds like a great idea! Of course, maybe Nik would encourage the Roc to try the water? Who knows what our boys will surprise us with, right?
Fantastic news! Sounds like you’ve got several launching pads set up. Hoping Nik reaches new heights from every one. I’ll be rooting for you both, from here on the ground.
You are one busy family!! My fingers are crossed for you that school goes well and that the sleep situation improves. Your guy is such an amazing kid. Incredible!
Congrats on all of Nik’s amazing progress. I hope the school works out (for both of your sakes), and may you all get some sleep!
Isn’t there something you can put in his ears to protect them? Or is he like Joey and will have nothing of the sort shoved in his ear?
GO NIK!!!
@Joeymom, Yes, we’ve tried some soft ear plugs but he only tolerates them for about a minute then he yanks them out. :-/ Going to talk to the ENT today about solutions.
So happy to see you here! Can’t wait to hear about school!!
I missed you soo !!!
Glad to see how well Nik is doing
Would love to hear more about school
So much wonderful news. I’m particularly in awe of a potential beach trip for N (well, except the ear infection part). I remember when Noah struggled and struggled around those huge fans the use for the bouncy house places, and this one day, he just found the strength to walk past that big loud fan…and he never looked back. We realized – much like our trips to Disneyland – that Noah would put up with the loud noises because he was motivated to push through it. So I wonder if something similar is happening with Nik? Whatev it is, it’s awesome! XO
Missed you! So happy to hear about the continued success with the talker, the eating, the swimming, and school. So hoping the ear/sleep problems get sorted out soon. xoxo
I think you last sentence……the part that reads Nik’s ready….says so very much. I know with Parker nothing matters, nothing moves forward, until he is ready.
I can’t wait to read all about school!
I learn so much from your blog. I gotta remember to comment to let you know I’ve been here.
Tammy and Parker
http://www.prayingforparker.com
http://www.5minutesforspecialneeds.com
@ParkerMama on Twitter
@Tammy Thanks. Glad to know you’re here.
@Gema and @Solitary Diner Welcome! (Or is it Welcome back? I’ve been gone so long I don’t know who’s stopped by!)
2 first syings you’ve written as “little bits of wisdom” are interesting! we (iranian) use the first one in farsi a lot, but the second one is new for me.
seems to be a good blog!
I would like to see your trace in my blog:
realhijab.spaces.live.com
Welcome back. This is comment #21, so apparently you have more than 14 faithful bloggers!
So great to see you posting again
and with so much news! I can’t wait for your post on Nik’s PRC device. So glad that things are busy and seem to be going so well right now, hooray!
School? That is a big step after the previous experience and I am glad it might be looking like a positive situation this time! Wish I was still there…I would have loved to have him:) Maybe some day. You get the right teacher and it will all work out! Not to mention give you back a little bit of sanity and “me” time that every person needs but doesn’t always get it. I can’t wait to hear how it goes.
What big steps forward. I hope Nik’s return to school means a little downtime for you!
Talk to the ENT about sized earplugs for him so he can go to the pool without you panicking… we had sets for my son while he had tubes in place – I never felt comfortable with letting him put his head under water (which he wasn’t overly fond of at that point anyway), but it allowed him to be in the pool and splash around without worrying about water in his ears. We also had a headband that both held them in place, and provided extra protection – you might find that since he likes being in the water so much, he’d be willing to put up with it.
Sounds like he’s making wonderful progress!
Thanks, Karin. We’ve tried all kinds of ear plugs to no avail. He tolerated them ONCE and then never again (this was just this past week, too!). On the plus side, the remaining tube is coming out on the 23rd and not being replaced. That means that we can deal with water in the ears by using over-the-counter drops which we can’t use now. Fingers crossed that it does the trick!